Sunday, June 30, 2013

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!

Tuesday, June 25, 2013

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. 

Monday, June 24, 2013

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. 

Sunday, June 23, 2013

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.

Saturday, June 22, 2013

I Cried Today - June 21st

I cried today.

It was both cathartic and scary to open that emotional door after diligently focusing on only the positive since surgery.

My first look at the diagonal incision that has replaced my left breast was a conscious decision. In the hospital, it was easy to avoid, doctors and nurses checked from the bottom, lifting the gauze up and obstructing my view. If I had wanted to see, I would have had to ask.

I didn't.

Dr. Z paused before removing the gauze from my incision.
I looked beyond her, at my husband, and said, "I haven't seen my incision yet."
"It looks very good, you are a fast healer," she commented as she felt the area for fluid and tenderness.
"Where do you want me?" Brandon asked. "Do you want me there? Next to you?"
I looked across the room, directly into the mirror.

The incision, depending on your perspective starts or ends under my left armpit and cuts diagonally down across what used to be my breast toward, but not all the way to, the center of my chest.
It's not an angry incision, barely pink in most places and tinged with a translucent purple thanks to the body-grade super glue that my surgeon used after the inside-only stitches.
Tears formed and fell before I really even realized I was crying.

It's not an ugly scar even in it's newness. It's just not my breast. My breast is gone. And it will take some getting used to.

In moments of clarity and strength, I am easily able to rationalize the loss:
  • I breastfed two babies and, at 40, planned no more
  • I have never defined myself by my body shape, only by strength
  • I made a decision that saved my life
The tears came anyway. My husband held my hand and wiped them away gently.

Once everything was neatly taped back on, Dr. Z asked what should have been an innocuous question, "So do you have an appointment with oncology yet?"
"We have to wait for path results to come back," I said, completely composed and over the 'moment'.
The pause was Hollywood-heavy with drama.

"Are my pathology results back?" I asked pointedly.
"Well yes, but your doctor will talk with you about them."

Pause here for a moment if you think I said, "Oh. Okay. That sounds good."

Uh Ya. No. 
Not sure what I said but here is what I now know.

Invasive cancer was found in the breast, a discovery that was predicted by the original pathologist and only validates the mastectomy. The invasive cancer is also Estrogen + (like the DCIS) which is good since there are drugs to work with that. The invasive cancer also tested negative for HER2. Which is AWESOME!

Unfortunately, the words I didn't want to hear came after I asked Dr. Z the pointed question, "What about the lymph nodes?"
"Dr. C will talk to you about that."
"Were there cancer cells in the lymph nodes?"
"Well yes, but just a few. And only in one node."

The wide open elation, the great relief, the expansive freedom that I felt from having my drain removed contracted to a single speck. Cancer in the lymph nodes is no bueno. Period. The end.

So, in exactly 32 days I've gone from mammogram to biopsy; to Stage 0 cancer to recommendation for left mastectomy and sentinel node biopsy; to removal of left breast and sentinel and auxiliary node; to diagnosis of invasive cancer (not yet staged).

Without much more to ask or say, I hugged Dr. Z goodbye, thanked her for removing the heinous drain, and went about the challenge that is dressing my upper body. 

And I cried.

Friday, June 21, 2013

Bye Bye Drain - June 21st

At 9:15am, I was sitting in the surgical clinic, quietly reviewing the highlights of the case I'd be presenting to the doctor that would hopefully result in the removal of my sluggish drain. 
Since it's insertion, my JP drain had been steadily declining in efficiency. In fact, the drain's lackluster performance is what extended my original hospital stay from one overnight to two and included a few tense moments when a not-my-surgeon-rounds-doctor put me on an NPO (Nothing Per Orem) order the morning after surgery and threatened a return trip to the OR. 
Thankfully my fandamntastic I-don't-have-time-for-BS-and-don't-give-any-either surgeon showed up an hour later.

"So, we could have a bleeder and we could take you back in there but, honestly, I tend to defer to my patients. So? How do you feel?" Her eyes met mine. Direct. Sincere. No nonsense. 
You answer women like this (especially your doctors) with the truth, the whole truth and nothing but the truth.
"Fine. Sore. Tired. And I want to go home, " I answered honestly and succinctly.
"So you don't feel like you're bleeding out?" 
"Nope." (Seconds later I wondered if I'd even know what that felt like but c'est la vie)
"Great! Then let's keep you one more night just to be safe and you can go home in the morning. I won't be upstairs until the afternoon so either the rounds doc can release you or you can wait for me and go home in the afternoon."
"Here," I said stretching out my right arm and making a good effort with the sorer left side. "Then let me hug you know because I won't be here in the afternoon!"

At 6:56am the next morning (6/19), I sent the following text to my still sleeping husband: 

I can go home whenever you come get me. Please bring coffee! XO

(Twenty seconds later, I called just to make sure he was awake, not wanting to spend any extra minutes attached to needles, confined to wards or dressed in hospital gownage - although I'd added yoga pants to the mix shortly after surgery so I could walk around).

On Thursday 6/20, I walked 1.74 miles and began weening myself off the narcos. Being home was wonderful for my recovery but the drain didn't perform any better on my home turf. And yet the seroma I'd developed had not continued to grow. So, this morning my rationalization for asking for drain removal involved the increased risk of infection for what was amounting to ~7-10ml of fluid drainage per 24 hours. 
On the drive over, I'd admitted to my husband that the breakfast I'd eaten wasn't based on normal morning hunger or routine but was simply insurance. A full belly insured no one could drag my ass back into the OR anytime soon! A childish move but sometimes you do what you have to do.

As Dr. Z (a wildcard doc I'd never met) entered the room, I quickly started to plead my case.
"So the drain's not working. It's really never worked. I just really want it out," I explained, simple and to the point.
"It's not working?" her interest piqued.
"Well since leaving the hospital I have only gotten between 7 and 10 ml of fluid a day."
"So it IS working."
"Well. Not WELL," I replied nervously. "It's never worked well. They kept me an extra day because it didn't work well."
"But it IS working," she smiled sweetly.
"Well it's far under the 30ml a day production level so I just want it out," I stammered, desperate to come up with the right words to have the damn thing removed.
"Oh. Yes. I'm here to take it out. See? All the drawers are unlocked so I can get to the supplies to remove it," the sweet smile sincere, a twinkle of amusement in her eye. "I just wanted to confirm that it wasn't NOT working at all. THEN we'd have a problem."

All I could do was exhale.
"Oh," I breathed as I tossed my head back in what was surely a display of mental exhaustion. "Thank you."

If you've ever had a JP drain removed, I need not explain the process. If you haven't, you probably don't want to know the details. Suffice it to say the amount of tube-age pulled out of my left side was staggering and the sensation of having said tube-age pulled out manually was... well... uncomfortably weird.

And immediately I felt better. Way better. 

For a few blissful moments.

In that tiny room, in the span of fewer than 30 minutes, I not only had the drain removed, I also had my first look at the diagonal incision that has replaced my left breast. 

And discovered the pathology results have come back.

And both of those topics are subjects of other posts. 

Wednesday, June 19, 2013

Home and Better-than-Fine

This post will be short... I'm kinda tired still.

I have broken the surly bonds of the hospital surgical ward and have returned home to a haven of flowers, delivered meals and thoughtful gifts.
Surgery went well, or so they tell me, I slept through it all.
We arrived at Kaiser Santa Clara at 6am on Monday 6/17, checked into surgery and then hung out for hours until I was taken to the OR at 12:30pm.

"Hung Out" is official terminology for: 
  • getting hooked up to IV fluids;
  • having vitals checked and monitored;
  • receiving two shots of nuclear isotopes to the left breast;
  • maneuvering the halls for an embarrassing number of trips to the bathroom;
  • watching movies, reading magazines and chatting with an attentive and very nervous spouse.

All this done in a bleached out hospital gown and funny-looking, XL, no-slip socks. 

Surgery was an eventful 2 1/2 hour affair with the removal of not only my left breast but also the excision of my left side sentinel node and one axilliary node. My doctor was highly impressed with the radiological (yep, made up that word I think!) presentation of the node if not pleased by its small size.

"Oh my gosh, that teeny thing was hot, hot, hot! It was so teeny though I didn't want to chance chopping it up and missing something so I sent it, and an axilliary node straight to pathology."

Basically what that means is there was no initial assessment done in the OR for cancer cells so we will wait another week to hear that the nodes were clean and I'm off-the-hook for radiation and chemo. I'm not worried, I'm positive it is cancer-free.

There is more to share about my longer-than-anticipated hospital stay but that can wait. Suffice it to say that I'm home, I'm happy and I'm well-fed. 

In other words, I'm better-than-fine.

Friday, June 14, 2013

Countdown to Mastectomy Monday has Begun

Countdown to Mastectomy Monday has begun; I've got a date with pre-op at 6am on Monday morning. Nuclear medicine at 8am and the cutting begins around 12noon. I tried to negotiate an early-release-for-good-behavior but was told if I'm good, they'll let me go home Tuesday.

Yesterday was a long day of surgeon conversations, post-op care primers and pre-surgery lab work. The evening was topped off with my first cancer support group meeting. Which was a total trip!

Not knowing what to expect, I took the give-it-five-minutes-and-see-how-it-goes approach. This is the same approach (as advised by my husband) that I take on those days I don't feel like going to the gym but I know I need the endorphin rush. 
And I've never left the gym after just five minutes.
I'd love to say the give-it-five approach works with every semi-dreaded activity but I've never had a broom/mop/sink-full-of-dirty-dishes compel my focus like that.

Twenty-minutes early, I sat in the room alone, reading my materials. The first woman I met was a soon-to-be 88 year-old fireplug. She was diagnosed with cancer nine years ago, had a stroke last year and doesn't seem let a damn thing get her down. 

"Are you new?" she asked pointedly.
"Yes, this is my first time," I replied.
"Well we are GLAD you are here but sorry you had to come."

She so succinctly articulated what I was thinking minutes prior. While I was eager to meet and learn from other women who have walked this path already, I was having a surreal "this is sucky" kind of moment.

As the group slowly funneled in over the next twenty minutes, I was greeted in a similar fashion by most and quietly listened in as they talked about vacations, grandchildren, jobs and partners.

Prior to a round robin, our evening's leader made a few announcements about local survivor and support events. 
"So when do I become a survivor?" I asked.
"Do you have cancer? Are you alive? *dramatic pause* Then you're a survivor," she announced with enough conviction that I was and will remain totally sold.

A decade younger than anyone in the room and only two weeks from diagnosis, I initially felt I might be in the wrong room. But hearing the other women's diagnosis and treatment stories was inspiring; hearing them talk about all the non-cancer things in their lives was a welcome change from the focus of my last couple of weeks. When my turn came, I started from the beginning. 

I've got my first post-surgery goal. Part of me wishes it were a half marathon but my goal is much more modest and a whole lot more meaningful. Based on my new friend's definition of the word, I'm planning to attend the Santa Clara 2013 Cancer Survivors Day event at Kaiser Santa Clara on June 23rd, almost one week post op.

This morning I went down to The Next Step in Los Gatos to be fitted for my post-op cami. It'll be six to eight weeks before I can be fitted for a prosthesis (aka: chicken cutlet) so I've got a cami and bra I can wear to make due until then. While I get more options after the six-week (full incision healing required) mark, I was a bit saddened to see my options were white and white and mentioned to the proprietor that the color and the fabric and the front opening was oh-so-reminiscent of my training bra days. 

I just may have to tie dye them!

With less than 72 hours until surgery, the family and I are about to pack up for a No Cancer Camping Weekend in celebration of Father's Day and in celebration of health. A couple days of uninhibited creek play, campfire stories, more than my fair share of potato chips and restful snoozing under the stars is EXACTLY how I want to spend my time.

Mastectomy Monday isn't going to tarnish a Father's Day tradition and it's absolutely NOT going to tarnish me.

Thursday, June 13, 2013

Confident But Terrified

Pre-surgery photo shoot a success. Mastectomy surgery scheduled for 6/17. Terrified. Confident but terrified.

There are lots of thoughts floating around in my head. Some of them are completely inane (how many miles of running/cycling can I get in before my surgery) others make sense (anxiety, relief, fear). Right now I'm settling my nerves with the calming of distressed friends and family; reading and re-reading of inspirational and supportive email/text messages; scheduling meal deliveries for next week; listening to the music that makes me smile, dance, sing; planning activities and play dates for the kids and compiling list of 'must-dos' before Monday at 9am.

Still a roller coaster and behind closed doors I'm a little shaky.

Going in with deep breaths. 

Come Monday, I'll be shooting for 'grace and aplomb' but I will absolutely settle for 'not-too-shaky'.

(And if you did not just bust into a rousing version of Jimmy Buffett's "Come Monday", try harder! Bonus live version with Kenny.)

Tuesday, June 11, 2013

My NEW Plan - for now...

After spending a few days reading, considering & engaging in conversation w/ my family & other DCIS w/ mastectomy women, I have decided (or finally figured out) that trying to plan surgeries around my trip to Texas is bass-ackwards (which I'm sure you already knew). I will now focus on surgery & my recovery & plan a Texas trip around those activities.

Six-mind numbing hours of online research, phone consultations, family history questionnaires and genetics counseling later, I have a new plan.

Since I am no longer beholden to specific travel dates, I have decided to cancel the separate node biopsy on 6/17. I now have an appointment with a breast reconstructor (although he may refer to himself as a plastic surgeon) on 6/20 & have been provided a consult to genetics (no appt scheduled yet).

If you are asking, "Duh! Why is she looking for genetics testing when she has already been diagnosed with breast cancer?" then let me break it down for you:
  • Pink isn't my favorite color; (green is)
  • I don't have a nicely shaped head so I won't look good bald;
  • This has not been nearly as fun as it looks.
In other words, if I do have a genetic pre-disposition to breast cancer, I'll be having a double mastectomy. By the grace of [insert God, gods, goddess, nature, luck, etc. here], I have early stage breast cancer. However, I am still losing a breast. And, if my risk is genetically high, Pancho, while cancer-free now, is at more-than-normal risk in the future.

I don't want to do this twice and I certainly don't want to do this with a more advanced cancer.

If I do not carry a BRCA 1 or BRCA 2 mutation, I will happily keep my right breast.
If I do, then I'm pulling an (you knew it was coming!) Angelina Jolie.

So. This is my new plan. I should have a mastectomy date on the books by the end of the week. My surgeon, the breast care coordinator and the majority of the staff I've worked with at Kaiser have now learned that while I may have a well-earned reputation for bringing order to chaos in the work/school/home environments, I am actually a bit of a chaos factor when it comes to trying to predict my decisions. Butterfly effect, baby. It's all about the butterfly effect
And I LOVE butterflies!

Pre-Occ-U-Pation (hum the title to the tune of Anticipation...)

Just found the ice cream in the refrigerator. It's been that kind of day.

I realized that usually by the time I sit down to write, I have worked a lot of things out in my head and may seem relatively focused, stable and confident. And if I'm not, writing helps.
What may be missing in my posts (or at least just buried under the amusing stories) are hours of rumination, the flip-flopping, the multi-directional frustration and, of course, the neurotic behavior the aforementioned 'features' trigger.

In just about any 24-hour period over the last couple of weeks, I have laughed; cried; pretended I don't have cancer; made a cancer-related joke (that usually only *I* think is funny); worried about my treatment decisions; changed my mind about my treatment decisions; conquered rational fear; become mired in irrational fear. Oh, I've also prepared dinner, washed laundry, driven kids to rock climbing and TKD and done some grocery shopping in an effort to distract myself and keep the wheels turning at home. 

But then the ice cream ends up melted in the fridge. Or the dirty dishes go in the clean dishwasher. Or I forget the water running in the backyard for eight hours. Yep. That happened.

So now it should surprise no one that my written moments of bravado are tempered by utterly random, but thankfully silent, freak-outs. Oddly, many of the silent freak-outs revolve around my treatment decisions. 

Mastectomy is a given. 
But one or both? MRI evidence points to a healthy right breast. But there is always the chance... 

To reconstruct immediately or delay?  Or to reconstruct at all? Immediate reconstruction seemed like a no-brainer at the get-go. But surprisingly (to me), reconstruction is only conducted in a minority of mastectomy patients according to and about 100 other briefs I've read.

Immediate or delayed reconstruction? There are advantages and disadvantages to both. Fewer surgeries and feeling 'whole' more quickly versus potential for improved results once the skin recovers and allowing for adjuvent therapies without compromising results.
NOTE: Adjuvent is a big word that in the world of breast cancer refers to things like chemo, radiation and hormone therapy!

Hormone therapy? Greatly reduces my 'on paper' chance of recurrence in the removed breast area as well as the incidence in the healthy breast. But tamoxifen increases odds of ovarian cancer (which is a doozy).

Genetic testing? Would be good to know breast wise but there are downsides to knowing there is an increased risk of all the other associated BRCA1 and BRCA2 cancers.

So these are the questions I turn over and over in my head. These are the questions I answer and then reverse my decision. These are the questions I'm usually pondering when someone asks me for the time, tells me a joke or tries to have a conversation about current events and I laugh inappropriately. I am just preoccupied. Completely preoccupied.

The good news? Ice cream is easily refrozen.

Sunday, June 9, 2013

Good News, Just Plain News & the Power of the Tide

So there is good news and just plain news.
We'll start with some good news, because I think everyone can use it.

The MRI of the right breast came back clean! Pancho is staying.

The left breast showed additional lesions but that doesn't change a thing. Lefty is leaving anyway. And, no. I have never previously referred to my breasts by name but a ridiculously dear friend from my college days happened to refer to them as such in an email the other day and I laughed so hard, I spit coffee. Still makes me chuckle and I figured everyone else might enjoy the laugh too. 

Now I'm laser focusing every piece of positive thinking toward 6/17 when I will have the left side sentinel lymph nodes removed. The activities of next several months hinge on the results of this surgery. If those lymph nodes are free of cancer, we are looking at a mastectomy with reconstruction and a trip to Texas on 6/19 (not at all in that order!).  If cancer is found in the sentinel lymphs, I have to play by different rules.

Since I've already met the chemo doc and explained that, while she was no doubt very nice and surely extremely adept at her job, I would not be needing her poison drug services; finding cancer in the lymph nodes would certainly create an awkward situation between her and I. I mostly likely would have to bake cookies to reingratiate myself into her good graces.

Same may or may not be true for the radiation doc. I was busy hatching a plan in my head when he was talking to me. 

The flood of positive energy, through hugs, conversations, email, phone, text, silly videos and a couple deliveries of flowers, dark chocolate and hard cider has been beyond amazing. In fact, there are some emails I read again and again because they give me such a sense of peace and strength. That or they make me laugh so hard I snort, which is awesome too.

Either way, I'm not feeling alone. Sometimes solitude is welcome and sometimes solitude is the gateway to dark, brooding thoughts. I haven't spent much time physically alone in the last few days and this has been a good thing. I'm either pleasantly distracted or talking with someone that can help me process reality. Often times, I am getting most comfortable with the whole situation when I'm talking someone else down from their own emotional ledge. A win - win.

Those few times that I have been alone, I am either gardening, exercising or writing. My garden has always been a glorious retreat from the bothers of the real world and the events of the last three weeks has not changed that. My front yard is a wreck but I'm packaging that concern up and letting it go. Exercise is my drug of choice (okay, AFTER coffee!). All the jumbly, grumbly thoughts in my head begin to order like neat files or fit together like jigsaw pieces when my body is in motion. Exercise helps me think. Writing is just another form of talking, and I love to talk, but being able to go back and read the feelings I may not have consciously shared with myself, helps me process too.

I stood on the beach, facing the ocean yesterday afternoon. Over the cacophony of early summer beach celebrations, I listened with my whole body to the crash of the waves. With every ebb and flow, I felt the power of nature deep in my bones. When I close my eyes and look for strength, I will see the faces of family and friends and hear the power of the tide. 

Thursday, June 6, 2013

Cancer - there is no easy way to spin it - update letter to friends and family

bcc: extensive list of friends, family, coworkers and extended community - and it's okay to forward

In what may be the most ironic sequence of events in my life, I was diagnosed with breast cancer one week ago. My sincere apologies for sending this out via email but I started the individual call process and it was exhausting... so this is a selfish shortcut.

As most of you know, my mother received a diagnosis of Stage 2B invasive ductal carcinoma in mid January. Her diagnosis was a polarizing event and I had taken a leave from work to re-focus on priorities and help her fight the good fight.
Exactly four months after her diagnosis (and exactly three weeks ago), I saw a lump in my breast and made an appointment for the next day. On Friday 5/17, my primary physician felt the lump, thought it was most likely a benign cyst and referred me to mammography for a mammogram and an ultrasound. 
On Monday 5/20, I could no longer see/feel anything amiss in my breast but I went to the appointment anyway knowing that, at 40, I could use a baseline.

The turn of events from there has been head spinning.
The mammogram turned up no evidence of a cyst but the radiologist noticed calcifications in my left breast that he thought warranted a biopsy.
"Seventy-five percent of these are nothing," he explained. "And the remaining 25% are usually just areas that are atypical cells." 
Unfortunately,  based on the proximity to my chest wall, a needle biopsy was not possible and an excisional biopsy was ordered.
Three days later, I had a lumpectomy. The decision to remove the entire affected area was a "while we're in there" type of decision. In surgery, the entire questionable area was removed. 

One week of waiting, fretting, worrying later and I was chiding myself for those wasted days of worry for what would surely turn out to be nothing. I was also chiding myself for agreeing to what would probably turn out to be an an absolutely unnecessary surgery without so much as a second opinion.

The cell phone rang during the middle of a memorial for a friend's mother. I left to take the call, already emotional. 
"You're calling to tell me everything is normal," I whispered, walking away from the crowd.
"I wish I were," she replied.
And then I was light-headed; my ears felt fuzzy, filled with cotton. 

On Thursday 5/30, I was diagnosed with ductal carcinoma in situ (early stage breast cancer). Obviously the news was not as good as we'd hoped but it was not as bad as it could have been either. I have DCIS. In other words, cancer but it has not invaded outside of the ducts of the breast. That was the good news.

I was also told that my margins (area around the affected cancer) were not clear. While, according to what was seen on the mammogram, my surgeon got it all, the biopsy revealed cancer cells at the edges of the sample. I would need more surgery and probably radiation.

On Wednesday 6/5, I had my appointment to meet my 'team' (oncologist, radiology oncologist, breast surgeon) and to hear treatment options.
While I was told to anticipate another surgery because the margins of the first lumpectomy were not clear, I was not quite prepared for the pathology results and ensuing recommendations. I have 'extensive and pervasive DCIS' and have been advised that a mastectomy of my left breast is my best option. The pathologist also believes that invasive cancer, while not visible in the sample, is likely so I will be having my sentinel lymph nodes removed as well.

This morning I went for an MRI to do a more extensive look. While I will lose the left breast regardless, invasive cancer sightings will prevent simultaneous reconstruction and likely trigger the chemotherapy path. We also want a good idea of whether or not anything is hiding in the right breast.

I will be fine. I am scared but I'm not sad. I have bouts of swearing but I'm not generally angry. Sadness will only prove a slippery slope for me and anger will expend vital energy that I need for myself and for my family.

I spent yesterday evening walking (and walking and walking) trying to get my head around what all this means and figuring out the positive spin. And there is one. We found it quite by accident. This could have been much, much worse. Also, I am in good physical condition so recovery should be fast and uncomplicated. And, as every single one of you on this email know, I am always up for a challenge... I believe this finisher t-shirt is one I want more than any other, ever. 

You may feel like you do not know what to say. That's cool, because there really isn't anything to say. This sucks. Plain and simple. It's also something to be overcome, not something that I will allow to overwhelm or overtake me. (Okay, at times it has felt pretty damn overwhelming!)

And, I know the next question everyone asks (because everyone that I've told has already asked it!) so I'll head it off with an answer.

What I need:
Positive energy. Really as much as you care to spare (just don't take any away from my mom!)
I've cried a little, I've sworn A LOT, but most times I'm trying to see the silver lining - we caught it early and it could have been much, much worse.
So please, please, please schedule that mammogram if you've been putting it off!

What my family needs:
Positive energy.
The kids know. They know I'm a little frightened but they also know I am very, very strong and this will be something we get through and celebrate overcoming together. 
They also may need to talk. I've told them it's okay to talk. It's good to talk (cry, write, vent, yell, etc.). I've asked them to talk to Brandon or me if they're scared or have questions but also to friends, to trusted adults and I'll also be hooking them up with Kaiser's kid support groups.
If they talk to you, I'd love a little heads up (to me or to Brandon) just to know how they are processing things.
And my parents know. As much as I would have liked to keep this stress far, far away from them, I could not imagine if the roles were turned around and my daughter kept something like this from me. They are fine too. Scared and concerned for me as you would imagine and floored by the irony as well but confident in my fortitude and positive all the way around. Mom and I will be getting/making matching t-shirts. Hers will have feathers...

I know this is a shocker of an email for most of you and, for that, I apologize. Like I mentioned at the get-go, the one-on-one calls just didn't scale with my repurposed energy level. 
For those of you that are interested, you're always welcome to call but, since I'm an avid journal writer anyway, I'll begin to keep updates on my long neglected blog.
That's tomorrow's goal. Okay, maybe next Monday's goal...

Much love and energy to you and yours,