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:
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