No Chemo. Is this Over?

Two months ago I didn't have cancer in my left breast. 

Actually I *did* have cancer in my left breast but I didn't know it so I lived my life like I didn't have cancer at all.

Now I don't have cancer in my left breast because my left breast, the DCIS, two lymph nodes and the two "surprise" invasive tumors were removed on June 17th.

So I really don't have cancer in my left breast. And an MRI says I don't have cancer in my right breast either.

And I have just been told that chemotherapy will not improve my chances of being cancer free in five years. So there would be no benefit to taking my system down with a bunch of poison.

Does this make the battle over? I get to keep my hair. I feel good. I've been to a cancer survivor event. Am I done?

For some reason, it just doesn't feel that way.

I started Tamoxifen on July 17th, a month after my surgery.

Tamoxifen is a drug known as a selective estrogen receptor modulator or SERM. Tamoxifen looks and acts like estrogen to the cancer cells but doesn't feed it and therefore keeps the cancer from growing and/or spreading to surrounding tissue. Since both of my cancers (DCIS and invasive tumors) feed off of estrogen, I’ll be taking Tamoxifen to reduce the chances of recurrence. Sounds dramatic but at this point, this feels like a daily reminder of the cancer that was hiding in my breast.

But the biggest reminder comes any time I shed my clothing and see a beautifully healed eight-inch scar where my left breast should be. 

Mastectomy recovery wise, things are incredible. I'm back to walking, running, cycling - even rock climbing and bowling. I dodged the chemo bullet and I feel physically strong but, in the quiet moments, I sometimes feel worry. And dread. Worry about what's hiding behind or inside Pancho (breast number two) and dread that I will again one day hear the words "You have breast cancer." 

Intellectually, I read and digest the information that ranks my 'risk of recurrence' in the next five years as 8% as long as I'm taking the Tamoxifen. I also understand that Tamoxifen comes with an "FDA black box" warning and cancer risks of its own. I also understand Tamoxifen, for some people, is considered somewhat of a cancer dragon slayer. I also understand that some men and women choose not to take it based on side effects that negatively affect their quality of life.

But probably the most significant and relevant piece of information that I know for sure is that my breast cancer risk factors were super low in the first place. I eat well. I exercise. I avoid toxins in my home and garden. And, until January 2013 when my mom was diagnosed with Stage 2b invasive ductal carcinoma at the age of 63, I didn't have a family history of breast cancer.

 Yet the last two months have been very real. 

On July 25th, I had my first appointment with the reconstructive plastic surgeon. In the days leading up to the appointment, I hedged on whether or not I was ready for such a conversation. In the beginning, I'd been adamant about wanting simultaneous mastectomy/reconstruction. Since there were so many unknowns including node involvement, I was told a simultaneous reconstruction was not advisable. In retrospect, I'm pleased with the path of an independent mastectomy. I'd been ignorant of my options and really was trying to get on and get past something quickly. 

A month ago, as I submitted blood for my BRCA testing, I felt confident that if the BRCA results were negative, I would happily keep Pancho and begin the reconstruction process with Lefty. What I thought I had decided a month ago and how I feel now, are different. Today I’m not interested in a cosmetic surgery, only required surgeries that prolong my living a healthy life. Today I'm not confident, as I mentioned, that there isn't some cancer evil hiding in Pancho waiting for me to get to the whew-I'm-so-glad-I’m-done-with-that-shitty-experience point and then rear its ugly cancerous head. 

I know this isn't likely. 

I also know I'm not alone in the anxiety.

I’ve had some nightmares. I think every cancer warrior must.

Some revolve around a new diagnosis. Some revolve around the word metastatic.

But every single one of them revolves around me leaving my children motherless way too early.

Anxiety and a person's ability or inability to deal with it can lead to a prophylactic mastectomy.

 And, on this day, I'm mulling over my options.

Thirteen is my new lucky number.

I scored a baker’s dozen on the OncotypeDX...

... which means no chemo!

As the phone rang, the kids were explaining a LEGO structure and adventure to me. From my daughter's bedroom, we heard the computerized female caller ID voice identify the caller as, "Kai...ser. Foun...da...tion."

I ran to grab the phone in the kitchen and immediately began pacing.

“Hi there! You’re calling to give me the good news,” I answered by way of greeting, certian this was Dr. J calling with results. “I got a 16, right?”

“No,” she said, barely pausing. “You got a 13!”

I’m sure I squealed like a little piglet at some point in time but, mostly I remember exclaiming, “Yay! I’m so glad. I’m SO glad. Thank you. I’m so GLAD” while tears rolled down my cheeks and I did a little jig in the kitchen.

With all the hullabaloo, the kids broke themselves away from their LEGO adventures and ran out to the kitchen.

“Mom, it sounds like you won the lottery."

“I did. I DID. No chemo!” I smiled through the tears of relief as I hugged them both.

Dr. J and I chatted a few minutes longer. A little about starting Tamoxifen, a little about more blood work I should have done and a little about our family’s upcoming camping trip to Sequoia National Forest and Kings Canyon National Park with my continued "I'm so GLAD" peppered in between.

I remember absolutely nothing specific regarding our conversation beyond the number 13, so I’ll be sending her an email asking what I’m needing to be tested for and when.

Meanwhile I’m going to revel in the lowest score I think I have ever received on a test (up to and including that really bad differential equations final!) 

Here's to being on the low end of 100!

First Official Oncology Meeting - Let's play a numbers game!

I love, love, love my new oncologist!

A new oncologist? Already Stace? But you only met the first one once.

Yep, and that meeting didn't go so well.

While very nice and certainly capable, she came across as low energy and I seemed to put her ill-at-ease with my jokes. 

Basically, we just didn't mesh.

So, at the  6/28 post-op follow-up with my surgeon, I asked for a new one. 

Actually, it played out a little differently:

"So, I'd like YOU to be my oncologist but, since that may entail more schooling for you, I'd be happy to take a recommendation," I announced.

"Who do you have now?" she asked.

"Dr. A is who we met at the 'wacky Wednesday' event on 6/5," I said. "But she didn't really get my jokes and in the couple of times we've seen her since, she still didn't seem to understand my vibe. I think I scared her."

"Hmm. She's good," she smiled.

"I need someone who is a bit more energetic, who understands that I'd rather laugh than cry at all of this," I said.

"I send all of my favorite patients to Dr. J.," she deadpanned. "Dr. J is no nonsense, very straightforward," she explained. "I think you'd like her."

"So..." I began, "How could I start THAT process?" I asked.

She was already typing into the computer.

My first appointment with Dr. J was on Tuesday, July 2nd and the expectation was a review of the pathology and histology reports as well as laying out the rest of the treatment plan. Much of the pathology information had already 'leaked out' and I knew the radiation doc had signed off on me - no need to radiate what's no longer there. I also knew hormone therapy would be a recommendation.

And then there was the topic of chemo.

When all this began, chemotherapy wasn't really on my radar. More to the point, the idea of chemo scared the shit out of me more than surgery. I've spent my life being relatively picky about what I put in my body; avoiding chemicals and pesticides; shunning artificial sweeteners and anything else that could be considered a carcinogen.

A helluva lot of good that did, right?

Chemo drugs are just poison and I wanted nothing to do with them.

Thankfully, chemo wasn't part of a treatment plan for DCIS. But, when invasive cancer was found in the breast, everything began to change.

As I mentioned before, there were two areas of invasive cancer found in Lefty after the mastectomy and the DCIS was diffuse and pervasive as expected. 

Officially, these are the specifics:

Infiltrating ductal carcinoma + Ductal carcinoma in situ

The cancer was restaged from a 0 (DCIS) to a 1B (not so bad) with a grade of 1 (which is awesomely low). The larger of the two invasive tumors was 0.9cm and, while there were cancer cells found in the sentinel node, the low number of cells reflect a 'node negative' result and the axillary node was cancer free. All of this is very good news - once you get your head around the invasive cancer bit.

But chemotherapy is now a very real option.

A few years ago, based on the above information, chemo would have been the recommendation. Today there is something called the Oncotype test which can help determine whether or not chemo will make a difference with the cancer cells I've got. Results are given as a number between 0 - 100. The higher the number, the more likely I would benefit from chemo. 

Unfortunately the scale is a little wonky:

• Low recurrence: <18 li="">
• Intermediate recurrence 18-30
• High recurrence >30

So, we could play the numbers and say I've got a 17% chance of NOT needing chemo. 

Instead, I'm sticking by the fact my favorite number is, and has always been, 16.

*fingers crossed*

Results of the oncotype testing should be back in the next week.

If required, my chemotherapy course, would be short. An infusion of Cyclophosphamide and Docetaxel every three weeks for four sessions. 

Essentially twelve weeks total. 

I feel pretty good thinking that the worst case treatment scenario really isn't that bad - I can do 3 months of anything.

Meanwhile, I'm walking, hiking and, as of this weekend, now back on the bicycle! Since surgery three weeks ago, I'm focused less on the simple mastectomy recovery and more on really just getting back to living life the way I enjoy living it.

A Surprise Garden Party - June 29th

Saturday mornings usually have a routine in our house.

My husband is up and on a bike ride with buddies before dawn, I sip coffee and play in the garden from daybreak until the kids slowly wake up around 9am. 

This Saturday was decidedly different.

Sleep comes and goes these days depending on what I'm mulling over and how comfortable or uncomfortable I can make myself in bed. Friday night wasn't so bad but I managed to sleep in beyond my typical early morning rise. Brandon had rented a rototiller the night before and begun what would be a long, laborious process of digging up the front lawn so I could reclaim the space for more edible garden. He opted out of his early morning ride and, in advance, announced he would rather take one later in the day. 

With all that in mind, I half expected to be roused by the sound of loud ground turning. Instead, I awoke, not to rototiller noise, but someone doing the dishes, quite loudly, in the kitchen. 

Cup of coffee in hand, I wandered out the the backyard to sit and soak in the early morning cool before the heat wave returned. My husband talked a mile a minute in my direction and it was hard to absorb what he was saying since the topics were all over the subject map.

Finally, completely unable to follow, I said, "I am really interested in what you have to say but I'm really struggling to process anything before I get through my first cup of coffee."

"Oh, sorry," he muttered not unhappily and continued to fill up the morning with thoughts on the day.

This is HIGHLY unusual behavior but the last month has been HIGHLY unusual all the way around.

Walking back in for a coffee refill, I noticed a box of Stan's donuts on the table. Another HIGHLY unusual sight at our house. Rather than sit out back, I chose to observe the progress that had been made in last night's evening rototiller sesh.

As I opened the front door, I saw a dear friend, arranging buckets of flowering sage in my freshly turned ground.

"Hi there," I was only slightly surprised thinking Norine must have seen the grand groundbreaking the night prior and came bearing gifts for our new front garden.

She was sheepish in her response, as if caught in the act of something criminal, but chose to join me on the back porch for some tea. Still dressed in my nightclothes, I thought the backyard was a better locale to enjoy the garden and my company.

Within minutes, a head peered around the back fence. Norm, a cycling friend of Brandon's who, or so I had been told, was unable to join the early morning Saturday ride because he had to be home by 7:45am. 

I thought, "Odd that he's at my house at exactly the same time but sweet of him to stop by to see how I'm doing."

Sweet, odd or otherwise, I was now dressed borderline obscenely for the company in my presence,  so I went in to get changed. When I returned, the oddities began to come together. As we all wandered through the back gate into the front to assess the rototiller's fine work, Brett's extended cab truck pulled up. Karie came from the other direction, garden gloves in hand. Andrea and Peter popped out of their car with shovels and a pitchfork. Kathryn meandered from down the way. 

And the friends kept coming.

Unbeknownst to me, Saturday June 29th had been declared "The Stacey Tinianov Front Garden Make-Over Day" and everyone had come not only to celebrate but to pitch in.

A proclamation was read, I shed a few tears of gratitude and amazement and then the shovels started digging, the pick-axe started swinging and everyone with a Y-chromosome took a turn with the rototiller.

Norine whisked me off to the nursery where I chose kumquat, orange, pomegranate and persimmon trees; blueberry bushes; bougainvilleas; kangaroo paws and more. The day was hot, hot, hot but you wouldn't have noticed by the smiles on people's faces.

Not only are they incredibly generous with their time and their energy, my friends are quite possibly the happiest group of individuals ever! As the day wore on, the fruit and donuts made way for grilled burgers and chips; the coffee and juice morphed into bottles of soda and beer but the heat only intensified. Some people stayed all day, some just stopped by to dig a little, spread some love and move on but everyone came with positive energy and a smile. I wasn't much help, in fact I was deemed the mascot by some, but after awhile I gave up on my need to participate with sweat equity and just soaked up the love. 

Over 30 people joined us Saturday. It was a modern day barn raising without the barn part!

I am still astounded by the event, still amazed at the outpouring and still humbled and energized by the love. And oh-so grateful for my life and the incredible people in it!

Slow and Steady Wins the Race - Post-Op 10K (walking!)

The evening after surgery on 6/17, my friend Nichole came to visit and a plan was hatched that in exactly one week, I would walk the 10K route I had dragged her on only a few short months before when her weight loss journey began. 

This time, one week post-op, I would need her to drag me.

While everything was said with an air of jest, the challenge was out there and would need to be met. So I began walking that evening, IV pole in hand, around the hospital ward. The scenery was repetitive, the going slow but round and round I went.

The rest of the week went as follows:

Wednesday June 19th: released from the hospital; 1.25 miles around the neighborhood (slowly)

Thursday June 20th: 1.74 miles around the neighborhood + .75 miles around the neighborhood.

Friday June 21st: drain out! 5K day - 3.4 miles to local Starbucks and back

Saturday June 22nd: removed myself from pain med day. Bad Bad Bad. No walking.

Sunday June 23rd: walked around Survivors Day event for hours; 1.5 miles around neighborhood

Monday morning arrived and the text came through:

• Nichole: Can I pick you up at 1 for our walk? Don't leave without me!!
• Me: I think that works (what I thought was, "oh shit, I'll be exhausted by 1pm")
• Nichole: Would u prefer to break it up and do 3.1 and 3.1. We could do the first three this morn? Then rest.
• Me: Hmm... Is that cheating or just a good idea??
• Nichole: I say good idea. It's still in a day, just a break in between.
• Me: Then let's do it. (what I thought was, "thank goodness")

Nichole arrived just before 9am. The day was overcast and surprisingly rainy.

I donned my glow-in-the-dark-esque yellow/green hoodie and we set off on the route I used to start my day by running. 

For me there was trepidation mixed with resolve.

I also knew that I wasn't going to turn around at 1.55 to make a 3.1 mile morning. Once I set out, I'd be touching that pole or calling my husband from a prone position on the sidewalk. 

Walking in those early days was an odd sensation. I'm used to matching my walking stride to the pace of my speech, which is fast. I felt less animated with a slower gait yet still had plenty to say.

One mile in, I was in a 'discomfort zone' but nothing unbearable. The most difficult part is trying to figure out what to do with my left arm. It wants to be up but needs to be trained back to a regular swing. I mixed it up with some raising and lowering that probably looked to observers like a tai chi tic.

We stopped at Starbucks 1.7 miles away (ironically NOT the same one that is 1.74 miles away in the opposite direction from my house!) for ice water and a shot of caffeine. Okay, and a bit of a sitdown. Then we continued on to the 3.1 mile mark, touched the pole, turned around and stopped at another Starbucks with only 2.8 miles left to go.

More water, more coffee, a shorter sit and then home.

Add another one to the list:

Monday June 24th: 10K day - 6.47 miles (two stops for ice water and coffee)

All in all, we were gone for nearly 3 hours which is ridiculous for a grand total of just over 10K but a huge achievement for me. 

Touching the Finish on my First Post-Op Goal - June 23rd

On June 14th, the Friday before surgery and during the Countdown to Mastectomy Monday, I announced I had a post-op goal to attend the 2013 Kaiser Santa Clara Seeds of Hope Cancer Survivors Day event on June 23rd. 

The emotional roller coaster of Friday bled into Saturday and I spent much of the day in my head. My head is a really fun (or at least amusingly bizarre) place on most days but physical malaise and mental malaise are just a bad combo.

Add to the drama a poor night's sleep, no doubt fueled by my decision to finally stop pain medication stronger than Tylenol, and Sunday was bound to be a much better day by any one's standards.

Sunday morning at 11am, dressed in a shocking cantaloupe-colored front zip hoodie, wearing a modified sports bra over my lopsided chest, I went with my husband and daughter to the event. (My son went to a Giants game, better offer and all that!) Within minutes after check-in I ran into the interim leader of the breast cancer support group that I had attended days before surgery. I also ran into several women from the support group who showered me with support just for being up, dressed and out of the house less than a week after surgery. 

I thought, "Damn, you people are easy to impress."

I SAID, "Thank you."

On the recommendation of the support group leader, we went to see Dr. David Sobel speak about "Healthy Pleasures: Living Beyond Cancer". 

He spouted off a variety of combinations of how people view the attainment of happiness: 

• "I'll just be happy when I lose that last 10 pounds."
• "I'll be happy when I get that promotion."
• "When I finish this project, I'll be happy."

And reminded the audience that the ONLY opportunity that you have, that we all have, to be happy in right NOW. As in NOW. Yep. Just NOW. And physically illustrated how happiness can pass you by while you wait for it.

Dr. Sobel is also a cancer survivor so his words acknowledged the roller coaster of emotions and the general shittiness that goes along with cancer treatment but the same set of rules apply regardless of what else is going on in your life. 

You get one chance every second of your life to be happy. Your choice.

In an effort to help people realign their thinking to capture the most from each day, he broached the concept of gratitude. 

"What are you grateful for?" he asked rhetorically.

And he suggested that beyond the blase and vague "family, friends, health, etc", each person write down three things they are grateful for within the last 24 hours.

Mine were easy, given the circumstances:

1. I am grateful for my husband who held my hand as I looked at my incision for the very first time and who helped me wash my hair in the shower this morning when I couldn't quite do it.
2. I am grateful for my two children who took it upon themselves to clean their rooms "Hefty Bag Style" on Saturday because they knew it would make me happy.
3. I am grateful for my health because without it, I wouldn't be standing here celebrating just six days after a mastectomy.

The exercise was centering but I was already feeling grateful so, when he suggested we turn our slips in and he would draw four winners from the 400 or so present to receive signed copies of his book, I turned mine in and turned to leave to find the booths.

"C'mon," I nudged Brandon. "Let's go."

"Don't you want to stay for this part?" he asked. 

"Not really. I never win anything anyway," I started before I realized that maybe sitting through some other people's grateful statements could be good for the soul.

"Okay," I sat back down.

The first woman called was grateful for her friends, her family, her health.

"Yep, didn't listen to directions," I whispered to my mate.

The second woman called was grateful for her family, her health and for some other thing I couldn't really understand.

The third woman was "Stacey Tin-eee-non-ov"

Close enough.

I sat there for a moment thinking about what was happening. I've been feeling like each time I dared ask or hope for something: clean biopsy, simple surgery, clean lymph nodes... the opposite was taking place. And now. 

And now I was being called up in front of several hundred of my new peers (on the cancer plane), to spell out exactly the reasons why my heart and mind should harbor only happiness at this moment.

I took the microphone, looked out at the audience and got a little choked up.

"Hi, I'm Stacey and I had a mastectomy on Monday," I began, feeling much like the stereotypical, drop-in guest to a 12-step program.

Before I could continue, the audience just started clapping. 

I spoke my three gratitudes loudly, with all the emotion with which I wrote them. And was launched immediately into what could only be construed as my own 15-minutes, turned four hours, of fame. 

Women who'd lost breasts or parts of them commended my on my strength and recovery; women who were still visibly suffering the perils of chemotherapy assured me I was strong enough to deal with whatever else cancer could throw my direction; and women who were getting ready to go under the knife listened eagerly as I told them everything really would be okay, thanked me profusely and hugged me gently.

And suddenly I felt less possessed by this disease and absolutely empowered by my ability to not only only my own happiness but to help influence others in the finding of theirs.

We left the event and I was exhausted physically, energized mentally and fulfilled emotionally. And pleased as punch that I had touched the finish line on one of my first articulated post-op goals. 

All-in-All, a good day (June 21st part 3)

Sans drain and dried of tears, I chose movement.

On Wednesday 6/19, following my release from the hospital, I walked the block. A measly route 1.5 mile route that I used to knock out in a frustrated hustle between work-from-home conference calls. 

On Thursday 6/20, I hit just over 2.5 miles split between two separate sessions.

Now, unencumbered, my Friday walk was a 2.5 mile, single session goal.

Normally, I walk alone or with friends. 

Okay, normally, I run. 

But the last month hasn't been so normal. 

My husband by my side, we set out at a pace that felt faster than the day before. The route in my head would have clocked just over 2.5 miles but the freedom of movement (even wearing the chest compression wrap!) was inspiring and motivating so, when it came time to make a turn, I instead asked for clarification.

"Does it still count as a single session if we stop at Starbucks for a sit down?"

Not missing a beat, my husband replied, "Absolutely."

One point seven-four miles there, a sit down, an ice water, a coffee and then 1.74 miles home. My first post-op 5K.

And then a nap.

And then a pain pill.

All-in-all, a good day. 

All-in-all the epitome of the roller coaster we've been riding for the last month.