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EIGHT DAYS LEFT

EIGHT DAYS LEFT

“Do you know the codes they are using?” the woman at Blue Cross asked me like this was a perfectly normal question. The only reason I was even familiar with the term, ‘codes’ is because my partner and therapist friends often talk about the coding (that is really labeling) of the various issues their clients have. Mixed anxiety and depressive mood? F43.23. Major depressive disorder? F32.3.

These codes are so that my therapist friends can get reimbursed. Insurance companies require every single reimbursement requirement to have a code, so when she asked me as matter of factly as she did, I wasn’t as surprised if I hadn’t know previously.

“I’m sorry, I don’t know them off the top of my head,” (you fucking idiot, I have breast cancer and am getting a double mastectomy, isn’t that the fucking code, dumbass?, just kidding, breathe… ) I was calling because I had just read the cover to cover packet I received from the plastic surgeon on what to expect and what to do to prepare for the upcoming seven hour surgery.

One of the lines in the twenty five page informed consent forms read:

“Depending on whether the cost of surgery is covered by an insurance plan( I think it is, hence the phone call) you will be responsible for necessary copayments, deductibles, and charges not covered. The fees charged for this procedure do not include any potential future costs…. Additional costs may occur should complications develop from the surgery. Secondary surgery…. charges involved with revision surgery will also be your responsibility.”

Because I am a responsible and self proclaimed self advocate for my health, I decided to give my insurance company a call. This is how we arrived at the code discussion that my very kind (not a fucking idiot as my previous fantasy conversation implied) woman on the phone discussed.

“I can call your doctors and ask for the codes they will be using and let you know,” Nicole said. “Great,” I said. After giving her the phone numbers of my breast surgeon and my plastic surgeon, I was placed on hold and waited. There is lots of waiting when you are in bed with the health care world. After about five minutes she victoriously came back on the line with the codes.

“19357 or 19361 and 19303 or 19305 are the codes, but they are not sure which ones they will be using yet so you can call back when you know and I can let you know.”

“Can you tell me what those codes stand for?” I asked as calmly as I could muster because seriously does anyone besides me see the absurdity in this conversation yet?

Pause. Silence. “Well, it will take me awhile to put these codes through and get the diagnosis and our call volume is extremely high right now so I am not sure how long this will take, but I can look it up when I have time and put it in your notes so when you call back, you can finish where we left off. Would you like the reference number?”

You mean to tell me there is not a search bar on her computer where she could easily and effortlessly enter the codes one by one and have it spew out the answer? Holy hell. I could be using this precious time in the week before this traumatic life changing experience to meditate or sit in my pretty garden and look for cardinals.

I could feel my heart starting to beat a little faster and rather than leave a trail, I thanked her for her time and assured her I would call her back. I didn’t. Not yet anyway, maybe next week.

My doctor has assured me that all of this would be covered, but I am sure Blue Cross doesn’t write that check happily. I saw the bill from my first biopsy which lasted about forty five minutes start to finish and it was three thousand dollars. 3000 DOLLARS and they didn’t even get the spot confirming the cancer that my second biopsy confirmed. I am going to be in presurgery for two hours, “arrive two hours before surgery time” (which is unknown as of today because they aren’t required to tell you the time until 5 pm the previous day) (yes, laugh here). The surgery is six and a half hours, let’s just say seven, then recovery, then two nights in the hospital. I can’t even imagine what this bill will be. The funny thing about it is it is not like they have a menu of services with all costs listed up front so you know what your financial responsibilities are ahead of time.

I own a business that provides services and as I go through this whirlwind experience, I fantasize about not having a price list when our clients come in and then after we provide the service we let them know the cost. Probably wouldn’t have a business. (No worries clients out there, I believe in up front and best business practices, but you know this). So despite the amazing wisdom of my doctor, she and he won’t be the ones responsible for the non-covered items, I had decided to be proactive and call my insurance company.

After that interesting conversation, I reflected back on my father. He was a rebel with insurance. My father was still in liberal land in his brain, (he voted for Obama,) As a matter of fact, he bought a one hundred acre ATV campground in the Northern Great Woods of New Hampshire, Strafford, NH to be exact, partly because he didn’t like the mandate of Massachusetts insurance having no idea that the president he voted for instead of John Mccain would be federally mandating health care with the Affordable Care Act. My liberal family lost him to the other side (aka Fox) after that and he went on a tear discovering his new best friend, Glenn Beck.

He didn’t like anyone mandating anything and he wasn’t 65 yet so if he had any health issues he paid cash. He would actually go into a doctor’s office and ask what the charge of the service would be. Once he had that information, he would follow up with the “Is that the price if I pay cash?” question. He used to crack up at the way the receptionist would respond. Often the actual doctor would come out and discuss this with him. I bet.

Cataracts? 3000. “How much if I pay cash?” he would ask with a straight face. When he sprained his wrist and went to the doctor finally after deciding it wouldn’t magically self heal, he was billed. The doctor had put some type of contraption around his wrist at the end of the appointment. When he was in Walmart, he saw the same exact contraption and bought it for something like 12.95. When he received the bill, as usual he analyzed it and noticed that the same contraption was billed at something like 129.95. Yep, you guessed it. He marched right back to the doctor, contraption in hand, receipt and contraption from Walmart in the other hand and demanded a refund on the bill. He got it. Self advocacy,? This is where I got it from. My father got it from his father. It may seem like it is about the money. It partly is, but really, it is about the principal of the thing. The ‘what’s right thing.’ He thought the demise of the medical world is that we all just stopped asking for the price of things. We became totally dependent on insurance providing coverage for every single appointment and this was the downfall of healthcare.

I always wanted my father to write a book about how he dealt with no insurance by choice, though of course he was educated and had the means to pay. He also waited too long to go to doctors when he was really sick. Ironically, when he turned 65 and could finally happily reap the rewards of Medicare, he was diagnosed with cancer and left this life on the government’s free ride. He probably looked at that as Justice. He died 2 months shy of 67. He didn’t know he had the BRCH2 gene when he died and he didn’t get to see the current political climate through the eyes of his recently turned Libertarian glasses. I can only imagine. what those conversations would have been like.

My father left his rebellious attitude about the medical profession in me. This was one of his many legacies I have in my soul. He was only twenty years older than me and parented in a non parent style of, “You’ll figure it out.” For a fifteen year old girl living on a small island populated by 3000 people in the off season, this style of parenting was probably not a great approach, but the fact that I turned out the way I did, I think gave my father a sense of self righteousness validating his style. I don’t think he really understood that behind the scenes was a support system of two aunts, two sets of grandparents that were permanent fixtures in my upbringing.

They were the voices in my head when I would inevitably take advantage of the freedoms my rebel father would grant me, not my father’s. There was no voice. His voice started to show up in me when my brother was diagnosed in 1994. His voice has gotten louder since his death 6 years ago. He died a week before I moved out of my house and my twenty year marriage and his rebel wisdom is with me every time I walk into a hospital, I go to an appointment and I get a bill in the mail. Because of his voice, I question everything, I research, I ask, I challenge. I have made so many observations about our healthcare system, that I could probably write a book.

I remember after my last radiation appointment, I had my oncology appointment and my partner and I went in with our list of questions about the aromatase inhibitor she assumed I would be taking. This drug had serious side effects (vaginal dryness, low sex drive, bone density loss, hair thinning to name a few, I don’t know about you, but recurring cancer almost seemed like a better option; be careful what you wish for) and I was being asked to blindly take it for five years. It was her first day back from maternity leave and I am sure the appointment was scheduled for five minutes because she had already called in the prescription to the pharmacy. I also think we may have been her first appointment of the day. After forty five minutes of questions, that probably made her run late all day, I wasn’t convinced that the side effects outweighed the benefits. We left unconvinced and I made an appointment with someone in Boston to plead my case of why I didn’t want to take it. Besides the side effects, I didn’t want to get sucked into the pharma evil empire. All I could think about was the side effects would need more follow up pharmaceuticals and then “they” have you. I know it sounds kind of conspiracy theorist, but I have to remind myself constantly that this whole shebang has the underlying “for profit” theme throughout and I am eternally skeptical. It never occurred to the first oncologist that I wouldn’t be considering taking this drug.

This whole experience for me, surprising to many is not first and foremost survival. I don’t have a death wish by any means. I love life. I love my life, but I worship my QUALITY OF LIFE. I watched two of my most beloved people get diagnosed and follow the hope in a jar that so much of the world of cancer promotes. I like sex, (actually I love sex,) I like a moist vagina, (love that one too) I love my hair, and I love my strong bones that I pay dearly for with my boutique boot camp gym memberships and my frequent trips to Whole Foods. I have lived the life I have by the choices I have made and continue to make.

I always advise women who are getting ready to open their own business to first and foremost think about their objective. This is the guiding light that will serve all decisions in their entrepreneurial journey. Mine was this and still is.

“To have my business run efficiently without my physical presence.”

The way I have lived my life is because of this guiding principal and it has served me especially well when my father was diagnosed, when my grandmother died, when my grandfather had a stroke and when I was diagnosed because it gave me the freedom to travel, to care and to self care. It still does.

I know that we have caught this early (again) and that breasts are not arms and legs. I know that I am not living in Syria trying to escape or a woman who has to worry about getting raped and victimized in front of my family in the Congo. (yes these thoughts enter my mind in my times of darkness and feeling sorry for myself) I think it is human nature to minimize the big picture so you can pull up those proverbial boot straps and move through. But my first and foremost thought is QUALITY OF LIFE. Surgeries change this. The unknown changes this. This is where I struggle.

As my boyfriend always says, “No one gets out alive.” My experience with the people I love is that they didn’t and as they didn’t they lost their quality of life. This is what is embedded in my memory pattern and as pragmatic as I am, I see them, I see their suffering. I see their hope and their joys diminished. This is not me, I know, but it could be and that is what I struggle with.

There is my darkness for the day. Now I will go look for the cardinals.


My father before cancer at his beloved campground with my son, his firstborn grandson.

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NINE DAYS LEFT

NINE DAYS LEFT

Thank God for therapy. Thank God even more for my therapist. She is home recovering from surgery and still offered me an appointment on her day off while she was recovering. I have been seeing her on and off for at least fifteen years but definitely more on for the last five. She helps me see that the darkness doesn’t always have to be light, that sometimes it can just be darkness. I never knew that. I always thought that darkness required work to make it turn it into lightness. Pronto.

Recurring breast cancer diagnosis in less than two years is darkness. My humor lightens it. My talking about it lightens it. My writing lightens it, but for these last nine days, it is darkness. I decided after yesterday’s appointment I am going to allow and permit the dark and wallow for a change.

I pause here and reread this last line.

I am going to allow and permit the dark and wallow for a change.

That feels totally foreign to me. My heart starts to race a bit, my head starts to spin. The cursor flashes at this next line as I feel a stopping point and a blankness for a moment at the words to follow. I realize that I have never really given myself permission ALOUD to allow darkness.

Sure I have experienced the sadness that life can throw at us. We all have our own pile of shit that weaves and plants in our lives, through our lives, but I grew up learning resilience. We pull up our bootstraps, (where did this phrase even come from? Actually I just looked it up in the spirit of good writing. “by the bootstraps” was synonymous with good old fashioned American gumption, it was a phrase used to define something as absurdly impossible.

We pull up our bootstraps and we fix things, we plow through, we figure it out and we move on. WE MOVE ON. So in my world, the point, the goal is to move on, to get to the moving on part sooner than later.

I grew up with resilient women. My two grandmothers graduated college in the late 1930s. My mother’s mother, my beloved grandmother who was from Wisconsin (automatic resilience just because of climate) married a really smart Boston Irishman who was both an artist and an MIT grad engineer, oh yeah and an alcoholic until he stopped drinking, yeah! and stopped working, boo:( She had to work, economics likely, but for sanity more likely. She had four children, a rocking house in Newton and liked to have tea at the Ritz so pulling up her bootstraps wasn’t an option, it was a way of life.

My father’s mother, my other beloved grandmother was the daughter of Russian Jews, growing up in Brooklyn who followed the rules, her rules. She got married to my grandfather and he got drafted, when he was about to be done with his service, Pearl Harbor happened and he had to stay. WW2 grandparents, Jewish, the Greatest Generation, RESILLIENCE indeed.

In her neat perfect world she created with my grandfather and their three children she was my go to person for normal. She was the love of my life, secure, grounded, maternal, pragmatic. She, like my other grandmother, exposed me to culture and its importance, gave me advice when I asked, and most importantly by example showed me unconditional love. She lived in pull up your bootstraps land. Actually it was such a part of her genetic makeup that I don’t even think she gave its power any thought at all. There was no wallowing or even considering wallowing as an option.

She was diagnosed with breast cancer when she was 37 in 1957. Two short years later, her father died of cancer when he was only 59. My grandmother had to have a radical mastectomy and a complete hysterectomy. Here’s the thing though, she never spoke of it again. As a matter of fact, she with three children, 13, 10 and 7 managed to keep a radical mastectomy and all of its post psychological trauma from just about everyone. The only reason I even knew was because she told me when my brother was diagnosed. I was 29. He was 24. She was 75. I was the first family member she said it aloud to. 38 years of not speaking about it and she had a breast prosthetic because “back then” reconstruction was not invented.

When I was older and more confident in approaching the seemingly off limits subject with her, I asked her some questions. I had just completed my first 60 mile AVON breast cancer walk and breast cancer was a hot topic. The pink movement had just begun. BLICK.

ME: “Grandma, why didn’t you talk about ‘it’?”

GRANDMA: “What was there to talk about, I lived.”

ME: “How did you manage to keep this from the kids?”

GRANDMA: “The surgery was planned at the beginning of the summer when the kids went to camp (in case you didn’t know most Jewish kids go to summer camp, not sure why, but just ask someone Jewish you know and I bet they will confirm). We thought it best to plan the surgery around their summer camp schedule so when they got home everything would be back to “normal.” Who is we? The male doctors in the 50’s for sure. ‘It’s best not to talk about it and move on with your life.’ I can almost see him in his white coat smoking a cigarette spewing this thinking of the times at my grandmother. In hind site maybe there is wisdom to this, Isabelle lived to celebrate 71 years of marriage. My grandfather is still alive at 99.

No time for darkness for my grandmother. I was the one who told the female family of her breast cancer because it was important and responsible for them to know. Not even her daughter, my aunt knew, and I actually don’t think they believed me until she and my uncle found the prosthetic while cleaning out her closet after she died. So much for “go to” normal.

I never thought to ask her how they found it, how did she feel about losing her breast at 37, did she talk about this with anyone, her best friends since grammar school who she was friends with up until she died at almost 93. I never thought to ask her what her follow up was, did she have radiation, chemo, was that even around then? I never thought to ask her what it was like to live for 55 years with a prosthetic? What was it like for my grandfather? Did their intimacy change? She would have answered me. I am sure it would have been a relief to talk about ‘it’ after all those years of keeping it bottled up. We had that type of relationship. Special, bonded, open, the type of relationship most people have with their mothers. Isabelle was like my mother for sure.

It took 35 more years before cancer in her direct line of family showed its face again and that was my brother, her first born grandson (I was the first born granddaughter, but we all know that biblical significance of first born boys). Ironically, the BRCH2 genetic mutation was discovered the year my brother died of cancer in 1995. My father was diagnosed (her first born son) with cancer when he was 66, she was still alive. The potential of opening up traumatic wounds was in her face. Talk about darkness. Talk about resilience. She was 91. We never considered looking into genetic testing because of the camouflage in the male line. But the fact is that because I have BRCH2, my father did. It does not skip generations. If my father had BRCH2, my grandmother did. And if my grandmother did, my great grandfather did. Like a puzzle, the last piece was me. IS me. I am still here. This is the light. So much for my attempt at wallowing.


Isabelle J. Horowitz. Before breast cancer.

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TEN DAYS LEFT

TEN DAYS LEFT

Fingers resting at the keyboard, I ponder these three words knowing that the next ten days will mysteriously accelerate. Today, actually this next three days, is jam packed with overbookings, overscheduling almost like I intuitively knew I would need the distractions.

It is 4:30 am and usually I am a really good sleeper. My heart races. If I had a blood pressure machine handy, I am guessing my usual very normal healthy blood pressure would be in overdrive. I am almost scared to have it checked knowing that just adds to my beating heart. I try deep breathing, endless meditation podcasts, reading, binge television, walking on the beach, working out, eating healthy, nothing seems to be working this time.

But this time is different.

Last time I was just going for surgery that was only going to modify the way my upper body looked. This time it is going to eviscerate it.

Sure it is not a leg, an arm, an eye. Yes I am 52, not 25, nor child bearing years. Yes I have had a half a century with my existing body parts.

Yes I will be alive.

I totally get it.

I have not lost the ability to look at this situation with gratitude and humility.

But I still grieve this loss, this surgery, this adjustment, the unknown, the synthetic parts of this that will soon become part of my body, the recovery. The reality that I often forget of the hard facts that I have a genetic mutation that adds a new layer of vulnerability. The same genetic mutation that likely took my brother at 25, my father at 68, my great grandfather at 59. My grandmother’s breast at 37 in 1957 when no one talked about “it” and “it” was radical back then.

I seriously thought that by radically changing my lifestyle, no sugar (cancer loves sugar, right?) No dairy (dairy = estrogen, right?) No alcohol (alcohol = more cancer, right? Well maybe not no alcohol….) Working out (I did that anyway) Meditating almost regularly (low stress = low cancer return, right?) Listening to integrative and innovative doctors on podcasts, meeting with said integrative nutritionist, going on an anti cancer supplement regimen, eating only organic, grass fed, pasture raised, local whenever possible, (just rereading this, I want to laugh at me, for sure my brother, father and grandmother are laughing if that is possible).

I seriously thought I would be finished with this cancer, that I would be able to check it off my list as something else I accomplished (just rereading this, I want to punch me out). I actually went to a specialist in Boston who is a genetic oncologist to present my reasoning on why I didn’t think I needed to go on the aromatase inhibitors the not genetic oncologist was trying to convince me unconvincingly to take. I didn’t. She supported my plan. Fuck off big pharma, you aren’t sucking me into your vortex.

I feel like I am whining. I am not, well maybe a little. This time I am trying to deliberately allow grief. This is not organic for me. Sure I can compare my situation to every worse case out there and there are many, but in the same breath it is my scenario.

I am a resilient, strong, glass half full kind of woman.

But in 10 days I am going to lose both of my breasts to a surgical knife. I know there are boundless cases of mastectomies and women who are alive and happy because of them. Perhaps when I have moved through all of the recovery and the quality of life disruptions I will feel better knowing I am alive because of this. But for now I want to wallow and grieve and feel sorry for myself. This is uncomfortable for me, but I am allowing the feelings for at least the next 10 days.


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THE CHANGING ROOM

THE CHANGING ROOM

Did she say opening in the front or opening in the back? Mmmmm. This wasn’t my first rodeo so I took a gamble and assumed the opening was to go in the front. Struggling to figure out how to tie the gown so my breasts would be covered with the two sets of ties one at shoulder height, one at the curve in my waist, I considered the question that wandered aimlessly through my anxious mind; does anyone who designs these gowns actually try them on before they sell them? And does the buyer of these gowns ask for a sample to try on before they likely buy thousands of them? Is the buyer or designer even a woman? Who buys these? Here’s the observation, the ties do not allow the gown breast coverage, yes my shoulder is very well covered and my waist is too, but my breasts? I’m guessing the breast area is the intended area to mask for the next step out of the changing room into the waiting room, the familiar waiting room that is all about anxiety production full throttle.

I managed to get my breasts covered because I had to tie the ties so tight so the gown tied too. Still there was a gaping hole between above my breasts to my belly button. For an imaging center that is exclusive to breasts, it seems odd to me that the gowns wouldn’t cover them. I leave the changing room clamping the opening that is not supposed to be open into the brightly lit waiting area where I am the only one waiting because I managed to get the coveted first appointment of the day. I sit down and start to practice deep breathing to try to calm my nervous feeling that has been present since my last biopsy six weeks ago that didn’t get the spot they needed to get to confirm or reject that the mass they found looks strikingly as familiar as it did two short years ago.

The gown not fitting well is one of many things I wish I could change about the sensory experience for women waiting for their second biopsy, (check) or their call back mammogram (check) or their second round of mammograms after their six month check up (check). There are so many little inexpensive things that an imaging center could do to reduce stress and anxiety. Here’s my top ten list.

  1. Eliminate the wearing of all perfume and heavy scented lotions by all staff especially because in breast imaging centers there tends to be hugging. It is such a bummer to leave after an early morning appointment smelling like someone else’s perfume, usually bad.

2. Train all front desk staff to smile and say a big hello, maybe even introduce themselves.

3. Instead of television blaring crappy negative television play Enya or George Winston piped in through all of the rooms. Sonos would be an easy addition to at least the waiting room and the second waiting room.

4. Buy gowns that people with actual breasts tried on before making us wear them.

5. Add directions with images in all of the dressing rooms because every single woman forgets the instruction as soon as the tech leaves the changing area.

6. Dim the lights in the waiting room outside the changing area so it has a calming effect.

7. Have all of the rooms where the imaging is going to take place have heat, (I can never understand why the rooms that we will be half undressed are always so cold) and if this isn’t possible, at least have warm blankets.

8. Instead of sending us home after biopsies with these large sports ice packs, how about a small 2×2 square ice pack that fits snugly in your bra? I know these exist because at a different imaging center a few years back, they gave me not one but two and I have yet to find them anywhere to buy, (never thought I would have to again)

9. How about some nice easy breathing techniques typed out around the changing rooms and waiting areas for anxious women to read instead of the magazines from 3 months ago that some previous patient left behind with their name and address torn off the front cover in Hippa fashion. Better yet, how about some copies for said patients to take with them.

10. This is a dreamy one, but how about a small room that does not allow cell phones or anything other than calming music and lighting so you could just sit in and practice some breathing techniques?

After going through this a few times in the last few years, it seems that as streamlined as getting us to repeat our names and birth dates and confirming the part of our body they will be working on, adding some new simple almost no cost systems would make an anxious patient less anxious.

Sometimes I wonder if anxiety is part of the overall goal. Stress does not help cancer for sure, but I always remind myself that hospitals are for profit. It is not that I think someone in the big office with their boards of consultants is sitting around figuring out ways to create anxiety=stress=more cancer, but if an average Jane like myself can come up with a sporting list at the drop of a hat after a few unsuccessful try ons in the changing room, it does make a chick wonder.

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IF I HADN’T

IF I HADN’T

If I hadn’t had a mammogram, I wouldn’t have gotten a biopsy. I wouldn’t have known about DCIS called 0 stage. If I hadn’t had a lumpectomy to remove the DCIS, the radiologist wouldn’t have seen a second spot and marked it so the surgeon could find it and have it tested. I wouldn’t have learned about its more invasive stage 1. If I hadn’t had the lumpectomy because of the DCIS, my surgeon may not have referred me to a genetic counselor because of family history and I wouldn’t have learned that I was BRCH 2 positive. I wouldn’t have been able to make an informed decision about preventative ovary removal because I wouldn’t have known about the high risk of ovarian cancer. I wouldn’t have been able to decide the best course of action for another lumpectomy combined with radiation or a mastectomy. I wouldn’t have taken the time to educate myself about the outcomes because I wouldn’t have known about any of this. I wouldn’t have been able to tell my family on my deceased father’s side to get tested and they wouldn’t have found out that they were BRCH 2 positive. They wouldn’t have been able to tell their young sons and daughters.

It seems as if every time I read the news, I read about the changes to mammogram recommendations. I read that too many mammograms turn into false positives, too many mammograms create unnecessary anxiety in too many women, too many overzealous doctors finding stage 0 cancer needlessly perform lumpectomies that often never turn into anything. Maybe I was in a small percentage that would have otherwise fallen through the crack, but I would rather be a healthy 52 year old woman, mother, business owner, and friend addressing small pre cancer from a healthy place in my life then finding out later on that a mammogram would have found this small spot if the recommendations were less confusing.

Breast cancer caught as early as mine was because of a regular mammogram. Yes, there are likely thousands of stories of false positives or missed cancer. But the fact is that if I hadn’t had a mammogram because of the confusion of how many is too many and ever changing recommendations that make women confused about their risks, my little 0 stage cancer that turned into stage 1 may not have been found. My healthy life that I enjoy immensely could have turned out much different.

With all the articles from supposed experts continuing to question the validity of the frequency of mammograms, we need to slow down and remember some important questions.

Do you trust your doctor? Do you have history? Do you trust yourself? Any diagnosis requires your personal participation. Do you have Ashkenazi Jewish heritage because that combined with history puts you at a high-risk category for BRCH 2.

This experience has led me to a new outlook in the medical profession and deep trust in my doctor. Because she told me about genetic testing, my decision about my own healthcare led me to personal responsibility. I question everything and though I trust my care, I still keep in mind that doctors are “practicing” medicine and our healthcare system is based on a for profit model. Personal advocacy and trust are the two areas that must be in constant symmetry. My regular 6 month follow ups have turned out to be a necessary evil because I am always on eggshells waiting for results, but at the same time I have caught an early return of something that will likely require a mastectomy.

If your doctor tells you mammograms should be less frequent, trust yourself. Use your family history, your age, even if your breast cancer is on your father’s side, you may be at a higher risk as I was because of the genetic mutation that didn’t really get noticed because of the male line of cancer. It was because of a very knowledgeable RI doctor who pointed out the line and recommended a genetic test.

This proved very valuable and this makes me a more informed patient and, more importantly, an alive one.

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VIVA LA BEACH

VIVA LA BEACH

We walk past each other in our hats, skirts, shorts, dresses, and tanned skin, waves crashing at our feet, white quartz sand beneath them, cool to touch. We are running, jogging, walking, biking, hand holding, traipsing, kids in tow, to find the perfect spot where we can stake out our territory for the day.

We carry with us on this day our baggage or back packs of memories that bring us together to relive them, recreate them, and reconnect with them. We get here early to make sure we get a coveted parking spot, our coolers packed with all of the accouterments that experience has defined for us as worthy for the day before us breaking our hard fast food rules we usually follow when we are not here in the white sands. Potato chips and tuna sandwiches are a definite staple in our ice packed coolers, fruit-always, thousands of us with hundreds of thousands of dollars of beach gear to have the perfect day either alone, with our lovers, friends, or our families. The seasoned beach goers are usually set up pre 10 am. The seagulls are on high alert looking for rookies who are easily tempted in creating a “nature” experience by feeding them their fritos and French fries they bought at the snack stand.

Bikini clad, young girls with their glorious booties in thongs, their firm breasts and young cleavage at a time in their lives where no scars from surgeries have left their mark. The only care in their world seemingly how much time they have on this day before they head back to work, or school or back to their grandparents house to get ready for dinner and synagogue to be paraded in front of their grandparents’ friends.

We pass each other occasionally making eye contact sizing each other’s outfits as women do, checking out body sizes, shapes, the way things fit and we do it in a nanosecond sizing each other up affirming how we look in our own skin as we compare and contrast. Thankfully the comparing and contrasting has shifted immensely as there is simply no comparing a 52 year old shape to a 20 year young one no matter how many beach boot camps, hill runs and burpees I do.

I consider myself a beach expert. I load up my sunscreen head to toe in the confines of my grandparent’s bathroom, naked, before I head out so I don’t miss a spot. I pack my cooler to the brim with my favorite foods, always too much. I usually bring three towels, one for my head, when I move from the chair to the ground for my afternoon nap, one for my hands, and one to lie on. I have been coming to the beach and loving the beach since I was born. I learned to swim in the lake at our family home in Maine, I took junior lifeguard lessons in the cold New England Atlantic in the early season and I passed swim tests at Camp Tikvah in the summers, treading water for a certain amount of time to prove our sea worthiness. I was “dragged” to the beach in the early morning at our other house on the Cape with my other grandmother and my mother arriving way before the masses. In those days it was instant “Diet” Lipton Tea (made with saccharin because my grandmother and my mother were always dieting and sugar free options was saccharin or nothing) in one of those plastic red coolers way before BPA was in our vocabulary. The beach back then also involved lots of smoking as my grandmother and my mother would place a towel over their heads like they were getting ready to steam their faces over a bowl trying to light cigarettes on the windy shore.

When we moved to Jamestown, RI, the beach no longer became a pilgrimage, as our new home was a small three by nine island. We learned to sail, to row, to dive off of the pilings, to go to the beach alone with our transistor radios. We developed rituals of getting in our first swim by May 1st to prove our New England hardiness. I still keep with this ritual almost forty years later.

I love the beach. I live for the beach. It is ironic because I am in the skin profession, but I don’t care about sun damage for myself. Vitamin D is my ally. I love to sit in the sun all day alone or with people. I love to get a tan. I read, eat, write, swim, sometimes walk and always people watch. The beach is my therapy. The added benefit of having a healthy 99 year old grandfather is that he still lives on the west coast of Florida so the beach is a glorious winter break destination as it has been since I was 13.

Of all the memories I have of my beach experiences, none include my brother, Michael, which is so weird as he was only 5 years younger than me and I can’t imagine he wasn’t with us. I can’t ask Ann (aka my mother) because even if she was speaking to me, her revisionist histories of our childhood is skewed and sugar coated with the fantasies of our childhood. I am sure her memories would lack truth and accuracy in their glossy chardonnay coating.

I can’t ask my father because he died of cancer 6 years ago and I can’t ask my brother because he died of cancer 21 years ago.

As much as I love getting a tan, I have definitely covered myself more as I now see the ramifications of my sun worship. (grandma, you were right) I wear a hat, I use 50 sunscreen on my face and hold on, I broke down and bought one of those spf 50 tent umbrellas. After the breast cancer surgery two years ago, I learned that I had a genetic mutation called BRCH 2 that besides making me susceptible to all types of scary shit, melanoma is one of the other cancers that I am supposed to watch carefully for. Is there no justice?

So now I must sit at the beach covered with my new Athleta top that preserves my décolleté so it doesn’t get sun torched because my beloved breast surgeon, (yes I have one of those) told me that it is important to preserve the skin before she operates. This time the operation is to remove my breasts and put shiny new ones on so, hopefully, I can be done with all of these cancer scares.

My partner, my friends and my colleagues roll their eyes at me when I speak of my operation in terms of summer beach going timing. “If I have the operation in early April, then six weeks of recovery, plenty of time before beach season.” I actually say this aloud to my doctors like it is a priority over living. Obviously I know it is not, but the beach has such psychological impact on me that sometimes I wonder. As I contemplate my upcoming surgery only two years after my last one, I can’t help but consider quality of life as I move into my fifties. All of these decisions I have to make as a responsible woman, mother, friend, employer seem automatic as obviously living trumps the inconvenience of missing a beach season. I know this. The beach now becomes my motivating force to recover, to heal, always my friend, getting me back to the life I choose to live fully and happily.

Uncategorized

BOX OF WINE

BOX OF WINE

The subject line read like this:

“NOTHING.”

Then the email.

“I’d prefer you never contact me again,”

The first two words that came to mind when I read them at the end of a full day of work were relief and freedom. Of course this could have been a big dose of shock and denial, but finally after 52 years of having a mother who never seemed to enjoy her child, me, it was over. She released me and I allowed it.

Twenty years my senior, my mother and I had a combative relationship from the get go. There were so many years of back and forth tensions and disappointments and as sad as it was, it felt oddly liberating. A mother child relationship is complicated. There are societal expectations of the sugar coated connection between parent and child especially between mother and daughter.

As a child, I spent a lot of my life trying to be the daughter she expected. The problem was that the expectations had no boundaries. It was like the black hole of expectations. The reality is that there was another continual force between us and that force was Chablis and Chardonnay. I have been to enough Alanon meetings in my life to know that no person, no child, no spouse can compete with the bottle or in this case, the box. The bottle is a wedge with vaporous consequences infecting the quality of relationship and leaving it without a chance.

What part did the daughter of this ‘it takes two to tango’ relationship play? Perhaps if I had been more loving, more caring, more more more. It’s just that when your mother doesn’t accept the love you have to give, when she is hard to love, when love is about control and expectations on her own terms, all the Louise Hay, Oprah reruns and Deepak in the world cannot fill the gaping hole.

The thing is, that as a daughter of an alcoholic parent, the emotional cork plugged the hole when her pain was so unbearable and that is when she stopped any ability to go inside the despair and go through it. Pain is painful. We all have pain. Our deep family pain was a very nasty divorce between my parents and ultimately the death of my brother from cancer when he was only 25 over 20 years ago. As a mother, I don’t know how anyone ever gets through it. But as a daughter left behind as the only child, dangling with despair too, it is hard to wrap my head around the ultimate abandonment of letting me go.

I’d like to say we both gave it our all. I don’t even really know what this means because when you are competing with a perpetual box of wine, the relationships that matter, that may have even a chance of survival, are left in the dust and alcohol triumphs.

For the daughters out there with mothers like mine, there is likely a feeling of understanding of how this seemingly unthinkable closure could happen. The end comes to a close not by a fuck you fight or a phone hang up or the silent treatment, we have had enough of those in our history, but by her manipulative email. “Don’t ever call me again” seems like a serious period at the end of a sentence, but it is a passive aggressive 101 comma. The decision I made to not respond, to not engage, not beg, ultimately gives me the strange last word.

I didn’t ask for the last word. I didn’t want the last word. When a mother asks for their daughter to never contact them again, there is a deep underlying sadness in the request. When I don’t call and honor the request, am I not saying to her, this relationship is not worth the fight? Am I not saying to her, I don’t love you, I don’t care enough about you? Does it leave her with the feeling of ultimate unloveability like she has always felt about herself, not worthy of love, not good enough? Or does it leave her with a satisfaction affirming her years of thinking that I never cared about her? No one wins. It is a lose lose scenario.

After so many years of apologizing for not living up to the never good enough expectations, her release of me from her life was both a very sad finality and a new beginning. It is like the ultimate self-fulfilling prophecy.

With the feeling of freedom, though, comes the immediate what ifs? What if she dies, what if her husband dies, what if she gets sick, how will I know, will it be in the will that I am not allowed to be there? How does this figure with my son? How does my son navigate this relationship, maintaining a connection with his grandmother knowing that alcohol is a driver in its inadequacies and that her behavior and example as a mother will likely make him question her moral compass? Does she realize all of the consequences before she hits the send button or was it Chardonnay that helped her along?

I remember the first time I had the courage to bring up alcohol as a possibility of its power between us. I think I was deep into my late 30s. The funny thing about alcoholism is that it has its way of hiding. I didn’t even realize that my constant walking on eggshells feeling since I was five or six years old was because of alcohol. I actually think I personalized it and felt my own lack of self worth through her eyes. Not until I was into my marriage, did I start to explore alcoholism and its divisive yet invisible power affecting communication, feelings and most importantly the growth and maturity in a relationship both with her and more importantly with myself. No one ever really says aloud that alcohol is the problem.

Sometimes relationships are just past the repair phase. Sometimes unspoken hurts, resentments, jealousies buried for years because of the numbing effects of alcohol just have to finish. To go deeper would mean bringing up years of stifled pain that once the genie was let out of the bottle, would be too much for a 72 year old woman to bear. This is more true for people who have been drinking their pains and their feelings, drowning them hoping they would never have the excuse to surface and be found. It seems so much easier to stuff them, but the ultimate cost is severed relationships that are near impossible to come back once they are cut from the tether.

So I grieve. I grieve the loss, I grieve the sadness of abandonment, I release myself and I release her. I forgive her and I forgive myself every day hoping that she can sense the lack of anger and the never-ending empathy I send to her. I meditate on both of our healing as we wind through the rest of our time separately but forever connected. It is painful, but I have done so much work in my life that I must allow myself the honor to disengage from a relationship that just doesn’t feel very good. For both of us.

I instead revel in the things I learned from her. I focus on these things when I look at my situation of facing a double mastectomy without a mother to come help me but probably would not find helpful anyway except in the fantasy of the help.

I revel and embrace my love of the kitchen and new recipes, her great laugh and sense of humor, her traipsing me to Newbury St for haircuts when I was six years old. I reflect back on her taking me for my first facial at the age of 12 leading me to the path of being in and owning my own beauty business because of her influence. I smile when I am packing up to go to the beach and I light up with the feeling of sitting in my beach chair in the sand on the first day of summer because of her. I revel in the amazing skills I have as a great parent because of the care she had for my studies, my safety, my shelter. I revel in the lessons I learned about taking care of a home, decorating it. I revel in the wisdom of being way better at staying calm and peaceful during my divorce because it was what was best for my son and my health. When you are married to someone for 20 years, anger is not an option, my parents taught me this from their mistakes in their divorce.

Each time the sadness hits me that I don’t have a strong nurturing relationship with my mother, I take great comfort in how this loss has lead me to have a deep and honest one with my son. When I see other daughters share a bond with their mothers, I am aware that there is a very real possibility I may never see her again. I focus on the things that I loved and learned. I try to replace these sad thoughts with all of the good things I learned from her that have shaped and sculpted my views of the world.

For these things I am grateful, grieving a traumatic life loss, but grateful.