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.

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.)

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 http://ww5.komen.org/KomenNewsArticle.aspx?id=19327356181 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.

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. 

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:

HUGS.

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,

Stacey

Despondent. And devastated.

Despondent. And devastated.

Tomorrow I may be angry but right now I feel just those.

Some twenty souls were gunned down today, many of them children. Children in school.

School should be a safe place. School should be a place kids WANT to go. Not a place they fear.

And as I scour twitter, BBC, CNN for news that makes me more and more heartsick, I chide myself.

"Why? Why are you watching? What does this accomplish beyond making you hurt and hurt and worry and worry?"

The sage answer I have finally come to is, "Nothing. Watching, reading, accomplishes nothing but exacerbating hurt and worry right now."

What I'm really looking for are answers. Answers to the questions, "How could this happen? Why would this happen? Who would make this happen?"

But those answers will never come. Not really.

People will speculate. Perhaps they'll discuss a disgruntled employee, a mentally ill member of the community, someone who just snapped, an evil person, a person who the system failed.

Whatever.

We will never really know. And, if we could really know, would that make it better? 

Would it bring back life to those who are now lifeless?

Would it erase whatever minutes of terror adults and children alike witnessed and will carry for a lifetime?

Will it make us understand?

Nope.

No, it will not.

Really, I think I want the answers so that I can do everything in my power to make this NOT happen again. To protect my children, to protect your children. 

A stronger community, a tighter bond with others? Helping people care about people and things that may live beyond the ends of their own driveways but definitely affect the larger environment that all of our children will be a part of one day.

And as I try to focus on work, on home, on something that will convince me that there is hope for humanity, I peek back at the Twitterverse and watch the argument over gun control ensue.

And think, "This is effin' ridiculous."

Maybe this is all about gun control. But maybe it's not. Either way, now is NOT the time to bicker dammit. Now is the time to come together. Now is the time to hug your children, your neighbors children, your neighbor, the stranger across the street regardless of their political affiliation or hot topic stance.

Ultimately, we are all part of the same community. We should really start to act like it.