On Being That Girl

Six months ago, upon waking up from a righteous mix of Propofol and Versed, I wanted to be THAT girl.

The girl who conquers breast cancer mind, body and spirit and moves on with her life stronger than ever before.

I am the girl who showed up to the Kaiser Permanente Survivor event five days post-op and took the mic to speak on profound gratitude.

I am the girl who walked a 10K a week after a mastectomy.

I am the girl who tent camped and hiked in Sequoia National Park three and a half weeks post-op.

I am the girl who rocked a bikini stuffed with a prosthetic breast on the shores of the Pacific Ocean two months post-op.

I am the girl who continues to show up at the breast cancer support group, decades younger than most of the women, with a can-do attitude and a positive spirit.

And I desperately wanted to be the girl who practiced mindful gratitude, overlooked the loss of her left breast, thanked her community six months after diagnosis and then closed the book on cancer.

But I’m not that girl.

Being lopsided makes me sad. Being lopsided makes me frustrated. Being lopsided makes me think about – and see the impact of – cancer every day. In the past six months, I have realized that while I still believe body perfection is ridiculous and impossible, body symmetry is important to me.

So I’m having surgery.

Women seeking reconstructive surgery post-mastectomy have a wealth of choices – IF they have enough of their own tissue to move around:

Deep Inferior Epigastric Artery Perforator (DIEP) Flap

Transverse Rectus Abdominis Myocutaneous (TRAM) Flap

Transverse Upper Gracilis (TUG) Flap

Superior Gluteal Artery Perforator (SGAP) Flap

Superficial Inferior Epigastric Artery (SIEA) Flap 

All of the above procedures use the patient’s own tissue and relocate it to the breast area.

My options were limited due to my body shape and size.

I can have implants or I can have implants.

So, on January 17^th, one year to the day of my mom’s breast cancer diagnosis, and seven months to the day after my first mastectomy, I will again be wheeled into the operating room.

Things will be different for sure. I will be having a right side skin sparing mastectomy and double reconstruction but I will not be having a sentinel node biopsy and I will not wake fearing what they found in my breast tissue. My right side mastectomy is prophylactic and was decided upon after much personal thought and extensive conference with my oncologist, breast surgeon, plastic surgeon and family.

And then it came down to a math problem of sorts.

I am uneven. I want to be even. 

If my plastic surgeon reconstructs a breast on the left side, it will be the pert breast of a 20-year old. My right side breast is 40 years old and nursed two children. I would still not be even.

My plastic surgeon sees no problem with that and could add a small implant to the right side to even me up. The rest of my team sees a slight problem with that right side bump since even a small implant in the right breast could potentially impede the accuracy of any future mammograms. In math, we'd call that a variable. And then we'd solve for it.

As a reminder, my first mammogram caught only calcifications. My excisional biopsy found diffuse DCIS and my two invasive tumors were only found by the pathologist who chopped up my breast tissue post-mastectomy. In other words, dense breast tissue has not served me well in the mammography space and adding more padding certainly won’t help anyone get a clean view of what's going on in there.

Nor will it help with my persistent anxiety around ‘what-if’.

Am I making an emotional decision? Yes. Will it forever protect me from a recurrence of breast cancer or a metastasis? No. Am I making an informed emotional decision that is right for me? Yes. 

Because I am that kind of girl.

In less than a month, I will wake up lopsided with tissue expanders in place under my chest wall. My breasts will never look normal (something about that enormous scar that starts low, crosses the left side of my chest and ends high under my armpit). I will begin a process of regular 'fills' until my skin (especially on the left side) stretches enough to accommodate a B cup again. Then I will have exchange surgery to trade my expanders for implants.

And then will it be over? Will I then be able to close the door on cancer and move on? I don't think it happens exactly like that for anyone. I don't think you 'get over' cancer, I think you incorporate the fear and the anxiety and the gratitude for all that is good in your life into your mindset. As much as I'd like to close the book on the last six months or, better yet, rewrite them, breast cancer is part of my story. 

But it's not the only part and it sure is hell isn't the ending.

I will most likely always suffer from a bit of anxiety around oncology follow-ups and random body pains but I will be on the path to feeling whole again. I will be making a decision and taking control of my own body as much as any of us are able.

I am THAT girl.

Prevention vs. Risk Reduction vs. Screening

After a series of particularly frustrating exchanges, I have decided it will take more than 140 characters to not only explain the distinction between prevention, risk reduction and screening in ALL cancers but to also explain why a distinction is so critical.

Prevention: definition 1. To keep from happening

Reality check:

• The only way to prevent breast cancer is to not have any breast tissue.
• The only way to prevent lung cancer is to not have lungs.
• The only way to prevent skin cancer is to not have that useful covering over your flesh and bones.

You get the idea.

But wait! There’s this list you received from your doctor’s office, right? Certainly it’s titled something provocative like: “Prevent Breast Cancer” and includes some or all of the following:

• Eat a well-balanced, low-fat diet
• Exercise regularly
• Limit alcohol intake
• Maintain a healthy weight
• Annual mammograms beginning at age 40

Yeah. About that.

I did all those.

And I was diagnosed at age 40 with two tumors of invasive ductal carcinoma, diffuse DCIS and lymph node involvement in my left breast. Did I misunderstand the rules for preventing breast cancer and do something wrong? No. I didn’t.  I tried to reduce my risk and it didn’t work. The above list may be a compilation of helpful hints but, even collectively, they do not prevent breast cancer, they help reduce risk.

RISK REDUCTION

Risk reduction in the spectrum of the healthcare industry attempts to lessen our chances of receiving a diagnosis by removing potential harmful exposures and/or behaviors from our lives and, in some cases, replacing them with behaviors that can help fend off disease.

To use skin cancer as an example, we can use sunblock liberally but we are merely attempting to reduce our risk. Skin cancer is still a possibility and a combination of exposure and genetics may render our efforts utterly useless.

Never-smokers without lung cancer who may feel they can cross malignant non-small cell carcinoma off their worry list should meet JanetFreeman who “never smoked anything except a salmon.”  

And there are tens of thousands more who followed the list of “prevention” tactics but were diagnosed anyway. Specifically, even if you are a never smoker, you may still have some of the following risk factors for lung cancer:

• Exposure to radon 
• Exposure to air pollution 
• Exposure to second-hand smoke 
• Exposure to asbestos
• Exposure to carcinogens we don’t even know about yet
• Exposure to previous cancer treatments
• Genetic predisposition to lung cancer

Risk reduction is limiting exposure to the above but does not guarantee prevention. And a genetic predisposition is hard to shy away from.

SCREENING

If we refer back to the sage if woefully mis-titled “Prevent Breast Cancer” document above, I’d like to call out the last 'prevention technique' - the oft-touted annual mammogram.

People. People. People. Regular mammograms don’t PREVENT breast cancer OR reduce risk. EVER. 

Mammograms are screening tools. Regular screening is encouraged so anomalies can be found as early as possible, be treated as quickly as possible and, hopefully, result in a better longer term outcome.

DISTINCTION is NOT A SEMANTICS ISSUE

This is not a tomato – tomato (c’mon, you’re supposed to pronounce those differently when you read them!) issue. Why is the terminology distinction important? Three reasons bubble to the top for me:

• Continued Diligence: Individuals must remain diligent in personal and professional screening even when they “do everything right” on the risk reduction list. Mammograms don’t “Save the ta-tas” they simply alert people as to whether or not their breasts are trying to kill them. I can personally attest to the fact that people who follow all the published rules for how to prevent breast cancer, and get a mammogram at 40, still get breast cancer.

• Removing Stigma and Eradicating Blame & Shame: According to anecdotal data, the most common question lung cancer patients field is, “How long did you smoke?” If you advertise risk reduction as prevention you are perpetuating a falsehood. Perpetuating the idea that cancers are preventable implies that, when a diagnosis is given, somebody did something WRONG.

• Redirecting Research Focus: While a list of ways to reduce risk for disease is helpful, such a list is not a magic bullet. Already genomic research is leading to personalized treatments. We need to expand efforts in this area. When the general public finally realizes that no one is “immune” to a cancer diagnosis, more focus can be applied in the appropriate areas.

Cancer sucks, no one ‘deserves’ it. Please don’t propagate a false sense of security or imply wrongdoing by patients who are diagnosed by claiming cancer is preventable. Please choose your words wisely.

Celebration of Gratitude – Lessons Learned (A belated Day 30)

If I were asked to verbally sum the effort and payoff of thirty days of mindful gratitude, I could accomplish the feat in two words: invigoratingly exhausting.

Living mindfully is, in and of itself, invigorating. Waking each morning without pre-conceived notions but remaining actively receptive to the enormous amounts of people, places, events, things and situations for which I have to be grateful for was energizing.

And exhausting.

Indeed the fatigue had nothing to do with the writing. The fatigue was a mental fatigue. An over processing problem of sorts since the universe did not see fit to stop illness, death or despair for me to simply revel in the goodness. I was constantly feeling overwhelmed with appreciation but intermittently dealing with profound sadness and grief.

In those same 30 days, a friend died, an uncle received a terminal diagnosis and another friend’s cancer reawakened. 

While gratitude felt hard to come by during those days, on Day 13, I learned that sometimes all you can do is just take the next breath. I will hold this lesson in my arsenal of dealing-with-crappy-day weapons.

There were also a few moments of personal despair when I realized that I had subconsciously planned for this party to mark the end of my ‘cancer journey’.

It didn’t.

It can’t.

Cancer may not always be in the back of my mind but six months in, cancer is the first thing I think of whenever I have a pain. A headache? Brain Mets. Bad tummy? Liver mets.

Please know that I understand this is ridiculous and please know that the jump is nonetheless very real. Several others (new and old to the cancer scene) have seconded these thoughts. They are rationally irrational but they are real.

Six months after my diagnosis, I am healthy, happy and looking forward (with only minor trepidation) to reconstructive surgery. I have a loving family, generous friends and a huge supportive community.

I am grateful. Very, very grateful.

NOTE: If you're new to the Gratitude blog posts, this may give you some context.

Celebration-of-Gratitude Party Eve – Day 29

Tomorrow my 30 Days of Gratitude culminates in our Celebration of Gratitude Party!

A month ago, to commemorate my good health on the 5-month anniversary of my breast cancer diagnosis, I decided to participate in Kind Spring’s 21-Day Gratitude Challenge. On the morning of November 1^st, I realized I had more than 3 weeks of gratitude in me and chose to document a mindful gratitude daily until the end of the month.

Tomorrow marks the six-month anniversary of my cancer diagnosis. My family and I are reclaiming the day to celebrate those people in our community that supported us in the darkest days of last summer.

Our Celebration of Gratitude invitation reads:

We are grateful for YOU!

On May 30th, our family heard the words 'breast cancer' and we were flung into a unexpected whirlwind of fear & anxiety, not to mention more than a few doctors appointments! Before we even recognized what was happening, we were cradled in a web of positive thoughts, home cooked meals, constant calls, fragrant flowers and even an amazing garden project.

Six months later, we would like to celebrate life & happiness by honoring our amazing (bigger than we ever imagined!) community with good food & good humor. 

Whether you prepared a meal, amused our children, sent flowers, texted words of encouragement, emailed a ridiculously funny (albeit inappropriate for work!) video, dragged my recovering body on a 10K, wielded a shovel in the replanting of my front yard or sent uber positive vibes through etherspace, you were truly instrumental in supporting us. Thank you, thank you, thank you!

Open House style - stop by for a drink, a chat or even just (especially just!) a hug.

~The Tinianov Family - Stacey, Brandon, Kendall & Riley

Nearly 100 people have RSVP’d and, once again, we are amazed. Since we married in a teeny ceremony just over fourteen years ago (okay, we eloped to wine country!), this party will be the most people who have ever assembled together at our request - nevermind in our home!

Twenty-nine days into a thirty-day exercise and I am astounded at all I have learned over the past month and profoundly grateful for the opportunity to thank those near and dear to us tomorrow evening.

Happy Frisbee-Aerobie-Soccer-Playing-First-Turkey-Cooking Thanksgiving - Day 28

If a picture is worth a thousand words, this will be my longest gratitude post yet.

Yesterday we enjoyed a visit from the Colorado B’s who stopped to spend a few hours with us on their whirlwind tour of California. 

This morning Grandpa T’s plane arrived early enough to get in a rousing round of Frisbee-Aerobie-Soccer, a Tinianov original!

I was fortunate to have my mom nearby for guidance while I cooked my first Thanksgiving turkey with all the trimmings. Her post-chemo hair is growing back nicely! And, if my milestone was cooking my first turkey, Brandon’s milestone was carving his first Thanksgiving turkey.

My twelve year-old asked that, in place of a grace, we go around the table stating a daily gratitude. She asked me to start and mine resembled my post from yesterday to the audience it was most appropriate for. 

We toasted health and we toasted togetherness.

Food was fabulous. Wine was delicious. Conversation was animated.

We dined outside in the incredibly warm afternoon before retiring inside so Grandpa T could walk the kids through the lighting of the menorah. 

An official Thanksgivukkah for us!                        

                    

And I have been profoundly grateful for every minute.

NOTE: If you’re late to my 30 Days of Gratitude, here is some context.

Gratitude Everlasting – Day 27

Just over nine years ago, my husband and I drove a small, silver Subaru Impreza from Littleton, Colorado into Northern California. Our vehicle was loaded with a couple suitcases full of clothing and two small children.  We didn’t stop until we hit the Pacific Ocean.

Our belongings would follow once we found a house to live in but, for eight weeks, we rented a modest two bedroom home high in the hills above San Jose and got by with very little in the way of “stuff.” Brandon went to work for a small start-up and the kids and I amused ourselves with visits to local parks, libraries and museums.

A week after arriving, Halloween was top of everyone’s mind – namely my toddlers’. We had no costumes and no familiar neighborhood friends to trick-or-treat with but my brother-in-law and sister-in-law invited us up to San Francisco to have the kids trick-or-treat with them. Their daughter was only six months old and wouldn’t care about the door-to-door adventure but they wanted my children to have a good time.

A month later we were still renting, and still without our belongings, when my sister-in-law invited us to her aunt’s home in Stockton to have Thanksgiving with their extended family. My three year old played “Grandma M’s” piano in her Cinderella princess dress and my two year old lay on the floor for hours building Thomas the Tank Engine train tracks with the cousins. Brandon and I shared good food and good wine with the adults. Following dinner Grandma M tossed all the kids into her enormous bathtub with a container of bubble bath. My children were delighted and we all felt grateful to be included as part of the family on Thanksgiving.

After another month, we had finally signed papers on a house but hadn’t yet taken possession. A cousin of my sister-in-law invited us to celebrate a gift exchange at their home in Menlo Park. We shared another evening of good food and good wine while my children received gifts from surrogate aunts, uncles and grandparents. Again, we were the strays but again, we were made to feel like a valued part of the family.

Many things have changed in the past nine years. The young children have grown older and established their own traditions; new babies have joined the family and several family members have died. The dynamic has changed and the extended family doesn’t get together nearly as often.

Tomorrow I will be hosting Thanksgiving at my home for the first time since my son was born eleven years ago. And tomorrow will mark the very first time I have cooked a turkey with all the trimmings.

As I brined the turkey, researched gluten-free stuffing recipes and mixed cranberries and oranges in the Cuisinart, I remembered how incredibly grateful I was nine years ago. We had placed ourselves in a new city, in a new state and yet we found ourselves fully embraced by relative strangers.

My mother is here visiting for two weeks. My father-in-law will fly in tomorrow morning. And I have invited my brother-in-law, sister-in-law and niece and nephew to join us for Thanksgiving dinner. After nine years, and under very different circumstances, I am profoundly grateful to have the health, the energy and the desire to host Thanksgiving dinner. 

My hope is that those who walk into my home tomorrow feel as welcome as I was made to feel nearly a decade ago.

NOTE: If you’re late to my 30 Days of Gratitude, here is some context

Imperfection Everlasting – Day 26

Tweetchats have been a unique and welcome addition to my life over the past five months. 

Cancer started it. The real time, if faceless, link with other breast cancer patients on #bcsm (breast cancer social media) felt like a lifeline in those initial months after diagnosis. Quickly I discovered the broader #hcsm (health care social media), the #DWDchat (death with dignity) and #lcsm (lung cancer social media) communities.  Through interactions on these one hour, fast and furious chat sessions, I have met some amazing people and have learned copious amounts on the relevant topics.

Chat topics vary widely depending on the community, the moderator and the audience that participates on any given day. But the mix of passion and knowledge is pure perfection and every week, I look forward to participating in the conversations.

I missed two of my favorite chats today.

On Tuesday evenings, both #tweetdiarieschat and #HCLDR unite a devoted and educated mix of health care providers, patient advocates, caregivers and patients.

Instead of joining tonight’s chats, my family, including my visiting mother, sat around the table and told humorous stories until both of my children asked about the ‘dating days’ before my husband and I were a couple. They’ve heard a few stories before but my mother lent a unique perspective.

The five of us spent two hours gathered around the dinner table and, as the conversation continued, I noticed my husband and I moved our chairs closer together. Our children laughed at some of the ‘bad date’ stories and then they asked questions about dating rules and choosing a life mate. My husband and I joined hands as we talked.

My son smiled and said, “And then you met Dad, and he was perfect.”

Complete silence.

“Riley,” I began tentatively, “If you wait for someone who is ‘perfect’ you will grow old alone. No one is perfect. Daddy was good for me. And I was good for him. Neither one of us is perfect.”

Today I am profoundly grateful that nearly 19 years ago I met the man I now call my husband. Together we epitomize the beauty of imperfection.

Counting Laps – Day 25

This afternoon we received word my uncle ‘arrested’ during his new chemo treatment today and is now on a ventilator in the ICU. A short conversation with my aunt was a frustrating exercise in trying to provide support from 3000+ miles away with only half the information. And a similar exercise has been going on for six months.

Seemingly simple questions like “What type of chemo is he on?” are met with, “I don’t know.”

Originally I made the case that stress causes temporary amnesia but, in reality, my aunt and uncle are unfamiliar with medical terminology and there really hasn’t been anyone to help get them up to speed. They are in the unenviable position of being overwhelmed and under informed.

After my mother and I discussed our respective experiences with oncologists, radiologists and surgeons, I felt certain that my gratitude today would be focused on my ability to gain, retain and process medical knowledge – my own as well as that of my children and my parents.

Then I picked my son up from school.

Newly eleven, tall and lanky, he enjoys running almost as much as he enjoys making jokes.

He needed to time himself in a quarter mile run and asked if I would walk him over to the local track. With his new watch securely tethered to his wrist, he engaged the stopwatch feature and took off in a sprint. Halfway around the track, he was still going strong with light footfalls and a smile plastered on his face.

He finished the quarter mile in 1:24. 

When we returned home he asked me to count his push-ups, sit ups and pull-ups. I did and, while his form was at times comical, his body seemed almost indefatigable and his breathing was always controlled.

While my son and I counted laps and calisthenics, my daughter was hanging by her hands and feet on a fake rock, at times 10-12 feet off the ground. She competes at the regional level in a USAClimbing event two weeks from yesterday.

As night falls, I know my uncle is breathing only with the help of a machine. And that makes me sad and very angry at a disease that claims approximately 160,000 people a year. 

The dichotomy between imagining my uncle's assisted breathing and watching my own children play and compete with healthy lungs simplifies and clarifies my perspective. 

Both of my children are active, healthy and strong. And for that, I am mindfully, profoundly and perpetually grateful.

Sixty Minutes of Forever – Day 24

We grabbed an extra chair from the office and five of us sat around the dinner table tonight.

We chatted about the day’s events even though we spent most of it in each other’s company. We bantered about current events, to the extent that an eleven year old and twelve year old can tolerate and engage in the discussion. There was good natured teasing and, because my mother occupied the additional seat at the head of the table, there were hilarious, if mildly inappropriate, tales from my childhood.

The food was nothing special (it was a ‘clean out the fridge night) and the wine only cost $6 a bottle.

But the stories and the laughter were priceless.

We spent an hour focused only on each other and I am profoundly grateful for those 60 minutes in-the-moment together. Those exact minutes will never come this way again but the memories are forever. 

Drop the Rock, Lean into the Embrace – Day 23

Sometimes, even on a beautiful sunny autumn day, my mind gets bent around the past (or hyper focuses on the future) and forgets to stay in the moment. On these days, I can over think sound decisions and attempt to rationalize relevant emotions out of existence.

After months of thought, I have elected to have reconstructive surgery. Today I questioned the impact more surgeries will have on my family and the choice seemed selfish and vain. I would love to be content with health, yet I am desperately missing symmetry.

I became caught in a vortex of raw emotion and intellectual rationalization.

And it spun me silly today.

And on days like this - days like today - I am profoundly grateful for my husband’s arms to melt into and the restorative kiss he plants on the side of my head as he whispers, “Stace, you need to drop that rock and give yourself a break.”

Maybe it's Not Genetic – Day 22

My mother epitomizes the phrase, “Born to Shop” and even chemo doesn’t seem to have reduced her stamina. I did not inherit that gene.

My mother has no problem parting with cash, regardless of the venue. I enjoy garage sales and thrift shops and, for the most part, refuse to pay full retail for anything.

We may be polar opposites in our merchandising preferences and habits but spending hours shopping with my mom has always been one of my favorite ways to spend a day.

Unfortunately, she lives 1600 miles away.

My mom is in town for the next two weeks and today I’m profoundly grateful for the gift of an entire day together. 

A mother-daughter bond is unique in and of itself but add the events of the last year and we now can relate on a whole different level.

(Even if I would never wear those pink pants she's rocking!)

Even if it Sometimes Starts Small, I am Grateful for a Voice – Day 21

QUICK UPDATE for those following regularly: My scan yesterday was a complete train wreck but all is clear!

If you were reading this gratitude series like a chapter book, the above update should have been marked with a spoiler alert but, since this is a real story and people worry, it had to be done.

Yesterday when went in for what will probably be my final mammogram, the pleasant woman behind the registration desk asked, “And how are you this morning?”

“Nervous as a cat,” I thought trying to yank my Kaiser card out of my wallet. But, being in complete control of my emotions, I said, “I’m nervous as a cat!”

I waited just a few minutes before being called back to the business end of the department.

“Okay, we are going to get better results this time.” I said with false bravado as we walked.

Not callously but with an air of that’s-not-my-job she said, “I just do bone density testing” and showed me to my dressing room.

Gown on, sitting out in the behind-the-scenes-hallway, I began chatting with the other waiting woman. When a tech brought blankets to us I joked, “Oooh! Today must be spa day.”

Evidently the way I said ‘spa’ or the nervous titter that followed was a flashing wow-she’s-terrified giveaway to another older woman with a lilting South American accent. Because the woman asked me if I was nervous and I confirmed that I was just trying to pretend I was in the spa. She sweetly reminded me there was nothing to worry about and ‘the squish’ it wasn’t that painful.

I smiled and thought, “If you only knew.” But the words that came out of my mouth were, “I know it will be fine.”

When the tech brought me in to the machine room, she gave my paperwork a glance and said, “So… it looks as if you’ve had a procedure on your left breast?”

“Um, I suppose you could say that,” pulling back the fold of my gown. “I don’t have a left breast anymore.”

“Oh,” she said. “I need to speak with the doctor. I’ll be right back.”

As she left I thought it both mildly amusing and slightly disturbing that I freaked out the tech but when she re-entered the room seven minutes later, everything changed.

“Well, the good news is, you don’t need a mammogram,” she said as if presenting me with a gift.

“On my right breast I do,” I said.

“The doctor says you don’t,” she replied.

“My oncologist says I do,” I countered. Anxiety immediately refocused itself into agitation. “And if you need ME to talk to the doctor I’m happy to.”

“I’ll be right back,” she said.

A few minutes later another tech walked back into the room. She happened to be the same tech from six months ago and I was so relieved they sent me a good one.

“Hi, I remember you!” I said before I launched into the craziness of the last few minutes and how pleased I was that she was going to do my test. She looked at me blankly, walked across the room and grabbed a piece of paper. As she faced me, the door opened and my tech walked in.

“Oh,” I said. “I thought she was going to do my mammogram.”

“No, I’m just here to pick up this paper,” she said as she waltzed out the door.

My heart sank much more than my face flushed.

The day’s original tech explained the doctor wanted to talk with me so I followed her, still gowned, back down the hall to the dark room. The radiologist sat in a dark room surrounded by monitors. I remembered the last time I was in a similar room six months prior. It hadn’t gone so well. The tech stayed at the slightly ajar door but outside of the room. To me it seemed as if she was hiding behind the door.

“Hi, I’m Dr. F,” she said as I sat down. “You don’t need a mammogram today.”

“My oncologist says I do,” I spat out almost reflexively.

As the doctor explained her expertise and she regaled me with details of ‘proper screening protocol’ she admitted she hadn’t read my history.

“So do you have a family history of breast cancer?” she asked.

“My mother has breast cancer.”

“Well, have you had genetic testing?” she asked.

“Yes, I am BRCA negative,” I explained.

“Well we only recommend six-month screening with BRCA positive patients.”

I reiterated the screening protocol my oncologist had set up and Dr. F said with a flat frankness, “Well I disagree with that and if someone needs a six-month screen, it is our office that sets it up.”

“My oncologist put in the order and your office DID set it up,” I explained a little louder than was probably necessary in that tiny little room.

The conversation lasted less than 10 minutes but I was exhausted and unnerved.

“So,” I began as I put my hand up to Dr. F as a signal for her to stop what I felt was a diatribe. “I am the patient and my doctors disagree. What should *I* do?”

“I’ve already emailed Dr. J,” she began.

I stopped her again. “I understand that. But I’m sitting here in  YOUR office. You’re doing what YOU need to do. What do *I* need to do now? Do I just wait? Do I call Dr. J? Should I just go home? What do *I* do?" 

I tried hard to keep the tears from spilling over but my voice cracked anyway.

“You should contact your doctor,” she advised.

Feeling more defeated than agitated, I explained that my best unsolicited patient advice was for her office and oncology to communicate better. And then I walked out of her office, put my clothes on, pushed the brimming tears aside and began to wander my way downstairs.

At the stairwell, I paused.

Instead I ascended the stairs and decided to walk to oncology instead.

“Hi, Dr. J put in the order for a mammogram and the radiologist just refused to do it. So I’m not sure what to do?” I announced by way of introduction to the woman at oncology reception.

“Well THAT is NOT okay,” she said. “Let’s get you some answers.”

Suddenly everything changed. A green paper was completed; Dr. J’s medical assistant came out; I was offered coffee & juice; given a couple of hugs and walked around the catacombs of the infusion center. The warm reception was like a great big hug and I burst into tears.

Within 15 minutes I was told Dr. J was in contact with Dr. F and that she would be right out to talk with me.

And she was.

She came out, gave me a hug, apologized and then explained the exchange. She confirmed that she heard the same speech I did but believed that, in my case, the protocol we agreed upon was best but that Dr. F was in “violent disagreement”.

Then she asked me how *I* felt about things.

“I’m sure Dr. F is very good at her job. But I TRUST you and, honestly, I just like you better,” I responded so grateful to have been asked how I felt.

Dr. J laughed graciously and said, “Well let me make a call and see about getting you that mammogram.”

She returned before I could pick up another “O” Magazine.

“They are ready for you now,” she said. “I’m so sorry about all of this.”

Another hug and I headed back downstairs only slightly concerned my pain-in-the-arse return to Women’s Imaging would mean a more painful squeeze but pleased that I would be finally getting the screen that reassured me everything is A-okay before I go into another surgery.

The mammogram was just that. A mammogram. If you’ve never had one there are plenty of people who can share their experiences. I am not a great one to ask since I've only had two and, compared to the last one, mine was ridiculously fast and one-sided!

As I mentioned above, everything came back clear. Like many other women, my tissue is dense and the first mammogram never saw the IDC but we saw nothing alarming on this one so I’ll take it.

If you’ve made it this far, you might be wondering what in the heck I’m grateful for out of all this. Or you’ve assumed I’m grateful for a clean scan.

While I am indeed very pleased with the clean scan, I am actually profoundly grateful for a voice.

I have one. And I can use it.

It felt very small sitting in the radiologist’s office but I used it anyway to say, “This is not okay,” until it slowly became louder.

NOTE: If I were following @Kind_Spring's 21-Days of Gratitude, I would be finished with this exercise but I have so much more to be grateful for! 

A Rainy Day – Day 20

Exactly six months ago I had my first mammogram. It didn’t go so well and, long story short, I had a single mastectomy less than a month later.

Today is my second mammogram and the upside is it will only take half the time.

I desperately want to be mindfully grateful for a clean scan but the superstitious part of me believes that if I wait to do that, I’d be jinxing myself.

So instead I will focus on the peace I found last night, standing outside, in the dark, in the rain.

Our first drops of this year’s rainy season came softly. No wind, no lightning, no thunder.

While I am actually a huge fan of monster thunderstorms, standing briefly under the gentle rain was calming and cleansing. I fell asleep to the mild drumming pretending the water was washing away my fear.

When I step into the mammography machine in a couple of hours, arm above my head, I will close my eyes and go back to the pitter-patter sound in my head.

The rain came late this season but it came just in time for me. And I am grateful.

NOTE: If you’re late to my 30 Days of Gratitude, here is some context.

Sharing is Caring – Day 19

“Sharing is caring.”

I think I first saw that comment on the blog of a fellow breast cancer survivor and #bcsm community member.

My incision was healing, my OncotypeDX results were pending and she was sharing explicit details and photos of her in-progress breast reconstruction.

The phrase seemed slightly off-beat and mildly amusing considering the context but the more time I spent in various cancer support communities the more I understood the concept.

Sharing food or wealth is an obvious expression of compassion but sharing your cancer story is tantamount to sharing your soul. As a general rule, newly diagnosed patients are overwhelmed, under-educated in medical terminology and highly anxious.

Doctors give you options. Friends and family give you love but veteran patients are the only ones who can simultaneously validate your fears and calm your nerves. They share their story and somewhat ease your burden by tacitly saying, “You are not alone.”

Tomorrow I visit the mammography clinic for what will most likely be the last time ever.

I’m nervous. My first mammogram didn’t go so well.

Yet I need only send out a signal to those men and women who’ve been down a similar road and they will remind me that scanxiety is normal. They will wish me luck and send positive energy. I will ask questions and they will share everything they can with me or anyone else that needs a hand to hold down this bumpy road.

For this compassionate community, I am profoundly grateful.

Gratitude Everlasting – Day 18

Dust covered and muscle weary, I am decidedly glad for the invention of 20 gallon storage tubs.

But my profound gratitude goes not to the tub inventor but to the helping hand that filled them with me.

My mother arrives from Texas on Wednesday. My father-in-law arrives from Colorado on Thanksgiving morning. Both will be here for a big turkey meal and will stay for the (now enormous!) Gratitude Celebration at the end of the month.

Both are staying in our modest home.

With my husband and me, two kids, three mice, one cat, one ball python and an 8-year old plecostomus this equates to about 140 square feet of personal space per living thing.

If we count the bathrooms and didn’t have any furniture.

I am absolutely delighted to host them and thrilled to be cooking my first Thanksgiving turkey for a party of 10 humans.  And I am overjoyed that just two days later, nearly 70 people will gather at our house for the enormous Celebration of Gratitude party on November 30^th.

But I’m a little desperate for space.

This morning my friend arrived, saw my dilemma and cheerily suggested we ‘make room’ for company.

Someone else’s friend may have tried to talk me into tossing out years of memorabilia or a surplus of craft supplies.

Not my friend.

My friend suggested we hit up Target for the quick and dirty space making solution.

When you arrive at my house and everything looks neatly put away, please know that all our junk is really hiding in the closet, tucked safely away in stackable containers.

Delighted to have the plastic tubs but I’m more appreciative of the friend that helped me fill them!

Beyond dragging your butt out for a walk a week after surgery; beyond sewing special bras for you after a mastectomy; beyond taking an emergency walk with you after getting really bad news; a true friend will help you hide your crap before everyone else shows up to the party!

And I’m profoundly grateful for her friendship.

Hit Me with your Best Shot – Day 17

Open hearts lead to open minds.

I say this often but usually am referring to expanding social and cultural horizons through a personal connection.

Today I’m profoundly grateful for opening my mind enough to participate and enjoy something new.

This afternoon I held a laser gun. And I pulled the trigger.              

To understand what a paradigm shift this is for me, you should know I was one of “those” mothers who refused to allow even Nerf guns into the house. The implied act of violence, even if the ordinance was made of foam was appalling to me.

My children didn’t have water guns. We had ‘water squirters’ that were shaped like fish and googly-eyed dolphins. My daughter didn’t seem to miss the firearms but my son used sticks and LEGOs for armaments and I usually tried to redirect his play.

Utter disdain for weaponry was not cultivated in my youth. I grew up in Texas dating young men who were religious about their right to hunt. My father was career Air Force and I have tremendous respect for those carry a weapon in the service of our country.

Truly, it was living in Littleton, Colorado on April 20, 1999 that drew a solid line for me between children and guns. It was walking my infant daughter around Clement Park exactly two years following the shooting that made me consider ways to shield her from the ugliness of the world. It was a series of consecutive school shootings here and abroad that made me want to place both my children as far away from what I felt was a culture of gun violence.

In recent years, as my son has experienced sharpshooting at summer camp and made friends whose families hunt, I’ve felt I may have moved too far to one side. After all, my children seemed to be the only ones without SuperSoakers. My son was the only one who used Nerf bullets on the trees during playdates because he had been indoctrinated that he wasn’t allowed to aim at living things.

More than once in the past few years, I have thought perhaps I should have advocated gun safety instead of gun obliviousness.

Six weeks ago, my son asked to have his birthday party at Laser Quest. 

I made the reservation, with some reservations but today I opened my mind and took a huge leap into a recreational game that I had vilified. 

When I entered the fray with my laser light sensors, laser gun and 28 others under the black lights and fog machines, I was truly surprised at how much fun I had. I was truly surprised at how I was able to differentiate the activity as play.

I aimed, I shot, I giggled.

More than once I stomped my feet at some child from either our or the adjoining party and said, “Stop shooting me, you already got me!” Every time I was hit, I let out a sharp shriek followed by a laugh.

To laugh in the face of a laser gun was shocking and liberating. I loosened up. I took a chance.

And no one was hurt.

An open mind allowed me to fully participate in my son’s birthday party, to share laughter with him, his friends and my husband and daughter.

And I am grateful.

Just this – Day 16

Eleven years ago today our son was born.

We kicked off the celebration with fresh baked donuts before making a trip to the LEGO and Microsoft storefronts. We "lunched" at Subway, spent the afternoon bowling and visited our favorite local sushi restaurant for dinner.

Today I am ridiculously grateful for a full day of celebrating this bright, compassionate, energetic and hilarious young man!

It’s the Little Things – Day 15

Halfway through my Thirty Days of Gratitude and today I am intensely grateful for the little things.

• A heartfelt hug from a veritable stranger who somehow just ‘knows’ you’re having a bad day
• A toothy smile from a toddler that you can’t help but return
• A random ‘thinking of you’ text from someone 1000 miles away
• Finding a ripe red strawberry in the middle of November

Just like spare change in the seat cushions, the ‘little things’ add up and are worth collecting. 

Grief and Gratitude – Day 14

Yesterday I discovered I was unable to be mindfully grateful in the midst of profound sadness.

Following some mental wrestling over what I could TRY and be grateful for, I simply sat with my sadness and didn’t try to pretend I felt anything otherwise, after a friend reminded me that sometimes all we can do is take the next breath.

And today a young friend of ours took his last breath.

Ironically Ibrutinib, a drug that may have improved his chances for survival, was approved by the FDA for use with mantle cell lymphoma this morning. But it came too late for him.

L died a little after 8amPT.

Late last night and even earlier this morning, on what we felt was the glorious news of FDA approval, I felt torn on what to hope for today.

The selfish part of me wanted to hope for a miracle recovery.

Yet the part of me that is slowly getting comfortable with death as a natural process (and the part that sometimes imagines the what-ifs of my own early demise) was only hopeful that L be at peace.

Friends gathered in the hospital and spent some time sharing amusing memories and, although I’m half a continent away, I know many of the stories, many of the people sharing and I can feel the energy of the room.

Laughter was shed as readily as tears. Celebration and mourning were conducted simultaneously.

While profound sadness and gratitude could not coexist yesterday, I find that the dichotomy of grief and gratitude can live harmoniously within me today.

And today I am profoundly grateful for two things:

The opportunity to have known such a unique character in life & the cathartic power of tears.

Gratitude Feels Hard to Come By Today – Day 13

After 12 days of thoughtful gratitude, last night we received word that a friend of ours was back in the hospital and this morning I awoke to this email message (names have been truncated):

***

I got a call yesterday from B. L's body is shutting down. He's put up a hell of a fight, but it's about over. We flew up to Maine last night and are here in the hospital.

Just wanted to let you know.

Fondly,
M

***

And, just like that, the mindful gratitude of the past two weeks left an audible sucking sound as it vacated the room. Of all the things that popped into my head, in the seconds stretched into minutes after reading that message, not one of them remotely resembled gratitude.

• L was diagnosed with a form of non-Hodgkin’s lymphoma fewer than 18 months ago.
• Mantle cell lymphoma is killing L.
• L is in his 40s.

In fact, of all the things that popped into my head, most of them either resembled a form of a mental it’s-not-fair foot-stomping or involved language far too vulgar to post.

So today, I walked my children to school thinking that while I could be grateful for so many amazing elements of my life (including beautiful healthy children), I was actually overwhelmed with sadness by the news and to pretend otherwise would be just that – pretending. It would be simply checking a box to find something good to write about today. Not because good ceases to exist in the face of sadness but purely because I am just not really feeling it today.

I can normally multi-task but being simultaneously profoundly sad and profoundly grateful sounds way outta my league.

After kissing my children goodbye, I spilled my sadness to a friend and I confessed that a daily gratitude post was feeling hard to come by.

I’m not sure what I expected to gain by sharing with her. I didn’t expect her to fix my sadness. After all, how does one ‘fix’ the nonsensical final effects of terminal cancer? I didn’t expect her to share my burden. She doesn’t know L or his wife.

I didn’t expect anything really. I just felt a little lost.

My friend, looked me in the eye and said, “Stacey, I’m sorry. Sometimes all you can do is just take the next breath.”

And so I will just do that instead.

Week Two of Gratitude Everlasting – Day 12

It’s mid-November in Northern California, the sun is shining, my window is open and I’m not wearing a jacket. My irrigation system is still in full swing and temperatures haven't required me to engage the central heating yet.

This scenario is wrong on so many levels since our rainy season was supposed to begin months ago but, since this post is focused on gratitude, I will look for the silver lining.

Day 12 – November 12^th – Today I am mindfully grateful for the flowers blooming in my yard.

Concerns over the driest year on record and apprehension over a climate that has shown a new tendency toward catastrophic storms aside, today I will relish the beauty that remains in late autumn and try and forget that this beauty may simply be the calm before the storm.

The flower is a calendula known for its anti-inflammatory and anti-viral properties. An edible healing flower that can soothe the body with its oils and the soul with its beauty.

Week Two of Gratitude Everlasting – Day 11

For the past few weeks, I’ve had an uneasy anxiety roiling in my head: my first follow-up oncology appointment. Logically, I realized the anxiety was a bit irrational. After all, no tests were to be conducted, this was simply a check-in with the possibility of a brief physical exam.

Despite logic, the nervousness persisted and I began to search for distractions. Looking for a daily mindful gratitude and beginning to document the positive has served as a tremendous distraction and I fully intended to be profoundly grateful for those diversions today (including trash magazines in the waiting room)!

But I have just returned from my appointment and realized I was profoundly grateful for something else today. A doctor who listens. And who hugs.

Day 11 – November 11^th – Today I am ridiculously grateful for hugs and those that tolerate them, return them and dole them out.

I’m a talker. And a hugger. Prior to attending a social event, I have to remind myself that not everyone likes high energy conversation and some people can even be a little tactile defensive when I move in for an embrace.

Sometimes this quiet, self-reminder changes my natural behaviors. Usually it doesn’t.

So, when Dr. J walked into the exam room, shook my husband’s hand and opened her arms to me, I felt instantly at ease. I could be myself. This non-verbal prompt was all that I needed to feel instantly comfortable to share the good, the bad and the frustrating. A simple hug told me that I was safe to ask the questions, share the concerns and the celebrations of the last few months.

I could spend hours hypothesizing on why a hug has this effect on me but I believe most of the magic of an embrace has to do with energy. When I hug you, I am consciously sharing my energy with you. If you are sad, I am actively trying to take some of that pain away and replace it with hope. If you are happy, I am eagerly nuzzling up to that happy energy in order to share the moment with you.

A hug is a very physical connection that can lead to emotional closeness and empathy. And fundamentally, I believe we are stronger when we realize we are all in this together.

Embracing individuals within a circle of family or close friends doesn’t usually get a second glance but I also hug people in the workplace and people I have just met. While this may seem incredibly odd to some who prefer a quiet nod or a professional handshake, I can take solace in the fact an embrace seems far more civilized than the way dogs say hello.

And I can learn a lot from the way a veritable stranger responds to a hug.

• Someone who hangs on tight is probably a hugger too. And needs that physical connection
• Someone who receives a hug tentatively and then falls into the clinch definitely needs the connection.
• Someone who barely allows physical contact is unaccustomed to people like me, in which case they definitely need the hug!

(While the above may not be considered empirical data validating my theory that all people should hug more often, I do believe this paradigm shift would make the world a kinder, more empathetic place.)

For a few months this summer I needed hugs more than usual. Each one had tremendous value to either my physical or emotional health.

• I received hugs that calmed my fears.                                                     
• A particularly poignant hug broke the dam on tears that desperately needed to break free.
• Daily hugs reminded me I was never alone and inspired me to smile a little brighter.

Perhaps the power of touch in and of itself is the powerful mechanism which would render a handshake as impactful but my preferred method of delivery is a hug. 

And I’m grateful for those who receive them (whether with grace or trepidation), those that reciprocate and those that initiate.

NOTE: If you'd like to spend the month in a similar state of gratitude, you can play along with me here in the comments section or check out KindSpring.org to sign up for their 21-day Challenge that began on November 7th.

Week Two of Gratitude Everlasting – Day 10

Generally I am described as an upbeat person. Yet, in the midst of the trials of everyday life including career concerns, child rearing, annoying illnesses and marriage squabbles, I can become hyper-focused on what is NOT working well in my life.

Earlier in the week, through a brief Twitter conversation, I had someone tell me they would love to be 40 again and full of energy. Implying that, at 40, I was young and I was lucky. I laughed and said that I was a huge fan of perspective.

Day 10 – November 10^th – I am mindfully grateful for the power of perspective in my life.

In November of 2011, my grandmother died suddenly after a massive hemorrhagic stroke. Holding her hand as she died was my first foray as an adult into the death and dying of a loved one process. In May of 2012, a dear friend was rushed to the hospital after a hemorrhagic stroke. At the time, she was 48 years old and there seemed little to be grateful for when more tests showed the stroke was precipitated by an enormous tumor in her brain. She was given weeks to live, if she recovered from the stroke.*  In January of 2013, my mother was diagnosed with breast cancer – the final “bad thing” to come in the world of tragedy triads because we all know that“bad things always come in threes.”

So just over five months ago, on May 30^th, I was woefully unprepared for my own diagnosis of breast cancer.

My baseline level of perspective had changed with the death of my grandmother and the diagnoses of my friend and mother and “at least I don’t have cancer” was a common mental meme for me. So when I suddenly did have cancer, I was left flailing for the proper perspective.

But with time comes long hours of obsessing.

And with long hours of obsessive thinking, comes perspective. Or at least it has in my case.

• Stuck in a ridiculously long line? At least I’m not fearfully waiting in the doctor’s office for my pathology results.

• Stopped in a traffic jam due to a five-car pileup? At least my family is not in one of those five cars.

• Circular argument with a preteen who thinks s/he knows everything? At least I have two healthy children (and the fact they can form and articulate logical arguments is kind of a bonus too)!

• Spouse throwing a tantrum (this never happens in my house but I thought perhaps some people could relate)? At least I have someone who has stood by me for nearly 20 years, through thick and thin and now in sickness and in health.

Perspective is about acknowledging that, yes, it could always be better, but it could always be worse. And today I’m grateful for the upside of the outlook.

NOTE: If you'd like to spend the month in a similar state of gratitude, you can play along with me here in the comments section or check out KindSpring.org to sign up for their 21-day Challenge that began on November 7^th.

* My friend pulled through the stroke and began palliative radiation to prevent another. After a couple of missed diagnoses, was diagnosed with metastatic lung cancer and has been thriving for the past 17 months. Whenever I get mired in the negative and need a perspective reboot (aka a mental kick in the ass), I look to her and her family. They are not simply surviving, they are setting an example of how to make the most of each day!

Week Two of Gratitude Everlasting – Day 9

Pre-dawn and still draped in my comfortable sleepy fog, I began to mull over what I was mindfully grateful for today. Quickly I found my topic du jour and began writing the details out in my head, quite pleased with the result.

And then I hopped out of bed and stumbled to the coffee maker that had graciously already brewed the morning’s first pot. By the time I opened my computer to check the latest world events and begin this month’s daily documentation of gratitude, I had forgotten my topic.

I had not only forgotten Every. Single. Word. of my entire post, I had forgotten the basis on which I had mentally written it.

Thank you Tamoxifen brain.

And then I read this article: “Researchers Discover NewDriver of Breast Cancer.”

Which began with: “A team of researchers at UT Southwestern has found that as cholesterol is metabolized, a potent stimulant of breast cancer is created -- one that fuels estrogen-receptor positive breast cancers, and that may also defeat a common treatment strategy for those cancers.”

Day 9 – November 9^th – Today I am incredibly grateful for clinical and academic researchers

Research saves lives. But the process can be slow.

My mother’s cancer is estrogen positive. My cancer is estrogen positive. After having my breast cut off and some lymph nodes, I started a daily regimen of endocrine therapy designed to starve cancer of the estrogen that fuels its growth. Since I am pre-menopausal, the drug of choice is Tamoxifen.

I hate taking Tamoxifen.

I’ve always been averse to popping any kind of pill but this one is particularly annoying causing “medically induced menopause” accompanied by moodiness and severe brain farts.

What makes the drug therapy more annoying is the knowledge that it is NOT a cure or a sure-fire preventative against recurrence or metastasis.

But currently it is the best damn weapon we’ve got and I’m glad to have something in my cache against cancer. Thank you researchers.

And now the men and women of research have brought us one step closer to finding a more comprehensive way to prevent cancer from coming back by figuring out something else cancer likes for dinner. And, as GI Joe once said, “Knowing is half the battle.”

The other half will be to figure out how to eliminate or limit this cholesterol metabolite (27-hydroxycholesterol or 27HC) from the equation.

Whether in a clinical or academic research role, the work is always tedious and often thankless. I used to go with my father to the lab when he was getting a graduate degree at Bowling Green State University. While I was fascinated with the pipetting, the culturing, the comparisons of experimental trays to the control trays, the long hours of documentation and often inconclusive results were far less exciting.

Today I can’t remember what I originally intended to be grateful for yet that escapade has led me to perhaps a deeper gratitude for clinical and academic research that I can credit my life to.

We all can’t be researchers but, if so inclined we can help fund them. However, before you open your PayPal account or pull out your checkbook, please consider looking up your preferred organization on http://www.charitynavigator.org. This site gives the lowdown on how much of your donation goes to the actual cause versus administrative or other costs.

NOTE: If you'd like to spend the month in a similar state of gratitude, you can play along with me here in the comments section or check out KindSpring.org to sign up for their 21-day Challenge that began on November 7th.