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.