"No Intracranial Metastases" = All Good

CLICK, CLICK, Clank. Whirr. Ka-Chunka, chunka.

Somewhere between when I pushed PUBLISH and when I climbed onto the MRI bed, I lost my Zen perspective. All I could think was, “Last year I came in for a mammogram expecting nothing and ended up with a cancer diagnosis. THIS IS MY BRAIN.”

Ya. So my inside voice was like that. My outside voice was overly talkative as it is wont to be when I’m nervous.

There was not enough leftover brain power to ruminate on climate change, world hunger or even simple algebra. I climbed in the bed. I was very still. I counted down from 1000 by threes.

Whirr. Ka-Chunka, chunka. Clickclickclickclick.

I stalled out a few times and at 221 was pulled out for my shot of contrast and pushed back in. I knew I’d screwed up the whole backwards count thing when I finally arrived at the number zero. There was enough brain function not allocated to anxiety to realize that, since 1000 is not evenly divisible by three, I shouldn’t have ended up at zero.

“C’est la vie,” my inside voice said and I started the process of counting down from 1000 all over again until the test was over.

Distraction is my preferred method of managing anxiety so I futzed around at home until I received email ‘bing’ at 3:03pm from my oncologist’s nurse practitioner:

MRI BRAIN W/O AND W/ CONTRAST

** HISTORY **:

41 year old woman with breast cancer and headache and periorbital

numbness.

COMPARISON: None available.

TECHNIQUE: Multiplanar, multisequence images of the brain were

obtained without and with 6 cc of Gadavist intravenous contrast at

1.5 Tesla.

** FINDINGS **:

Ventricles and sulci are age-appropriate in size. No suspicious

parenchymal T2 hyperintensities. No restricted diffusion to

indicate acute infarct. No suspicious susceptibility artifact.

No masses, mass effect, or extra-axial collections. No

hydrocephalus or herniation. Intracranial flow-voids are intact.

No suspicious parenchymal, leptomeningeal, or dural enhancement.

Orbits and globes are intact. Paranasal sinuses and mastoid air

cells are clear.

No suspicious scalp or calvarial lesions.

** 

Impression 

**:

Normal contrast-enhanced brain MRI.

No intracranial metastases.

Clear sinuses.

No intracranial metastases. 

No intracranial metastases. 

No intracranial metastases!

I did a little dance. Walked outside and smelled some of my front yard roses with my completely “normal contrast-enhanced brain’.

(Thanks for all the good vibes texts and emails - they were obviously put to good use!)

Turning Scanxiety Into a Math Problem

Within two hours I’ll be enclosed in a long, lighted tube and lying very, very still.

An occasional “How are you doing, Stacey?” will break through the crazy loud clanks, clicks and whirrs.

"I'm fine," I'll answer. And, after the third or fourth ask, I may respond with an, "I'm great."

And I will mostly mean it despite the fact I dislike noisy, enclosed spaces.

In fact, I will be doing math problems in my head.

If I start to get exceptionally agitated in that tiny confined space, I will revert to counting backwards from 1000 by threes. The backward counting activity is challenging enough to keep my mind off of the extreme enclosed space and yet simple enough to do while putting up with the noise from the MRI machine.

I am having an MRI to rule out any abnormalities with my noggin.

There will be nothing amiss. At least there will be no abnormalities discoverable by MRI.

MRIs don’t pick up anxiety. MRIs don’t pick up frustration. MRIs don’t pick up fear.

Actually, I am surprisingly mellow this time around. I have a coping mechanism (math problems) that works for long runs, long rides and even long scans. And I’m confident that the MRI will simply serve to show that this Type-A personality can lie still for longer than most people think I can.

In the scheduling phone call, the MRI tech asked, “Are you claustrophobic?”

I paused, chuckled and replied, “I KNOW that’s a trick question. But I’ll be fine.”

And I will. 

1000, 997, 994, 991…

A Tsunami of Emotion & the Rogue Wave

Grief comes in waves.

Losing someone close is not a clean-cut mourning process with a timeline. Anniversaries, songs, places, even smells, can trigger random memories that spur waves of sentiment months and even years after the original goodbye. There is the initial tsunami-sized emotional destruction and then continual reminders of the loss that ebb and flow as the tides.

Occasionally these emotional aftershocks are even more severe and more poignant than the initial grief.

And I got smacked by a rouge wave a few weeks ago.

Cancer = Grief Even When you Survive

A cancer diagnosis, treatment and recovery resembles that very same cycle of grief. We’ve all lost something: a body part, a physical functionality, an innocent ignorance (or an ignorant innocence!).  In my case, the grief surrounding the loss of my breasts pales in comparison to the grief involved in the loss of the it-can’t-happen-to-me-ignorant-peace-of-mind that accompanies youth and a lifetime of good living, good health and good luck.

Where’s the Damn Finish Line?

Ten days after surgery number four, following yet another recovery plan to the letter and eagerly anticipating the celebration of another birthday, I was physically coming right along but emotionally knocked flat on my arse.

Perhaps I set myself up for it. I expected this final surgery to be a breeze, I looked forward to being ‘done’ with cancer and all its trimmings.

Logically I know this doesn’t happen. I’ve written those very words before. You don’t package diagnosis and treatment into a nice little box and label it Cancer Memories. The process is permanently altering in many ways.

Yet my thoughts were still trending toward, “Once the exchange surgery happens, I can get back to normal.” Yep, I said the word “normal” to myself. 

Oops.

This last surgery was reactionary to remove my leaky expander and while definitely desired, it was comparatively unplanned.  My recovery plan was hastily put together and resembled my January plan in many ways. I felt as if I already had this t-shirt and was not really in need of another.

Hindsight has such clarity. I realize now that four surgeries in 10 months is a helluva lot for any single body to handle. Physically and emotionally. I lost things tangible and intangible. But I needed to be reminded that everything I lost was real and it’s okay to grieve. I also believe I forgot that a recovery in the middle of a recovery may be physically similar but emotionally more complicated.

Birthdays: A Celebration or a Lead Up?

And then there was the issue of my birthday. My 41^st birthday.

Part of me, a large part, was just glad to have made it to another birthday. I am attuned to the fact those are not always givens and, in the past year, have lost several people who will never reach their 41^st birthday thanks to metastatic cancer. But another part of me, a smaller but very real part, didn’t want to upset the proverbial apple cart with too much pomp and circumstance.

You could call me superstitious and you’d probably be correct, but the anxiety surrounding a repeat of last year’s month long birthday celebration that was capped off with a cancer diagnosis was not something I was looking forward to.

And the Tide Flows Out Again

In the thirty-seven days since my last surgery, I have laughed and cried. I have berated myself for ‘going backwards’ and also celebrated my successes.

In other words, I have lived every moment of what I felt.

I feel centered now. I feel strong today. And while I not-so-secretly feel as if this ‘journey’ should be over, I realize that two steps forward may occasionally be accompanied by a single step back.

And, by anyone’s measure, this is still progress.

My Very Own Final Four - Winning all the Brackets

From excisional biopsy to today has been 10 months.

Four surgeries in ten months and this is the final, making this my very own Final Four amid the March Madness!

As has become customary, I'm putting out my post-operative goals so I can visualize success and feel a sense of accountability to make them all happen.

Reconstruction is Not for Sissies - Fret Happens

I am 5’3”.

I weigh 125 pounds.

And, over the past eight weeks, I have had over 800ccs of saline injected into the tissue expander that is reconstructing my left breast.

If you are fast with math facts and volume amounts, your eyes have probably popped out of your head because the left side of my chest should resemble an enormous cantaloupe.

But it doesn’t. 

Actually my left expander is leaking and we’ve been overfilling the defective device twice a week to try and maintain skin stretch. Instead of another surgery to replace the flawed left expander and then one more months down the line to perform the exchange surgery for both breasts, we are accelerating my final procedure.

Why do I say ‘we’ when my job as a patient is to keep my head on straight, show up to appointments, lie still during fills, follow my doctor’s instructions and well, just be PATIENT.

Because I am not that kind of patient. I am an empowered, if impatient, patient.

And because I truly feel the surgical path we’ve chosen was a team decision between my doctor, my family and myself. It would not have worked for everyone. I suppose the upside of breast cancer at age 40 is my skin is still supple enough to stretch well and I heal quickly.

A complication was not part of my plan and has been, without a doubt, the most difficult part of reconstruction. The literal and figurative ups and downs of going from even to lopsided to over-filled to even is difficult. But I remind myself it isn’t more cancer. It’s just a pain in the arse.

And a pain in the head.

I become self-conscious in a way that has never been me. After a fill, I dress normally and appropriate for our warm Northern California weather. As my expander deflates, I don baggy sweatshirts making my entire shape shapeless. On the really rough days I question the soundness of my decision to reconstruct in the first place. And then I become irritated with myself that, after everything that has happened over the past year, I am the least bit concerned with my own aesthetic. 

The cycle is vicious and while, on an intellectual level, I refute the value of fretting - fret happens.

Finding other women who had walked my path helped me get through some of the early 'dark days' after diagnosis. Conversely, I've seen very little with regard to personal stories on leaky expanders and at times have felt isolated in my frustration. 

And then Dr. H puts in another 100ccs and I’m even.

And I’m happy.

And I’m just counting down the days until March 24^th. (Time to construct another Recovery Plan)

Early on in my diagnosis and treatment, I remember someone saying, “Reconstruction is not for sissies.”

I unabashedly concur.

In fact, I may even need that on a t-shirt!

New Plan: The Good, The Bad & The Ugly

We have a new plan. 

And, as with all plans, there are upsides and downsides.

A weekend without any fill appointments confirmed that my left expander is indeed leaking saline. Although I reached out far and wide, I only connected with a few individuals who have experienced a similar issue and their choices were to replace and continue the process. One woman was close enough to her exchange surgery that she endured a few extra fills prior to exchange.

Still four months out from the minimum window for exchange surgery, feeling somewhat stuck and definitely shrunken, I made an emergency appointment for Tuesday February 25^th. Dr. H confirmed the leak and filled the left side back to status quo.

As we discussed potential next steps, I felt myself gravitating toward the let’s-just-get-this-over-with decision to replace the offending expander. I asked if the procedure could be conducted under a local anesthesia as opposed to my being completely out. The answer was, “Well, it could be but I don’t want to do it that way.”

Even after I promised I wouldn’t sing too loudly in the O.R., Dr. H refused to perform a replacement surgery with me semi-conscious. Before I could make any other commitments I wouldn’t be able to stick too, he offered up an additional solution which stopped my mouth from chattering.

“If I go in to replace the expander and everything looks good, I could just put the implant in.”

I verbally (and probably physically) jumped at the option.

Accelerate the exchange surgery? 

Absolutely. 

Yes, please. 

Sign me up!

THE GOOD:

Contrary to the original plan, I will not be waiting until sometime in the middle of summer for my exchange surgery. I have been right-sized and now will have regular fills on the left side to maintain the skin stretch.

My doctor verified the acceleration of the exchange timeline would not compromise my health or the quality of my results. And then I fact checked with a few studies, so we now have a plan.

Actually, I should rename this section THE FANTASTIC, because THE GOOD barely scratches the surface of my feelings.

THE BAD:

No plan is perfect. In order to make this new plan a reality, we must keep the left side expanded. In order to maintain expansion, I am having continuous fills.

In other words, I have twice a week visits that begin with a deflated left breast and end with an over-expanded left breast.  

As the breast expander loses saline, it wiggles around a little and is less-than-comfortable but certainly not unbearable.

The pain in the arse factor is high and I will have another physical starting over point.

All-in-all, THE GOOD far outweighs THE BAD.

THE UGLY:

I embarked on reconstruction because, despite my best efforts, I was unhappy with the asymmetry of my body. I spent months in a whirlpool of self-reflection and analysis in order to choose a path that was just right for me.

Having a complication, or a hiccup, as I now refer to my leaky expander issue, sometimes leaves me questioning the wisdom of my decision to pursue reconstruction. In a rough emotional moment, I wonder if the universe isn’t somehow saying, “Bad idea, Stace.”

In these moments my husband reminds me that immediately following my January surgery, with only 100cc in both expanders, I was nothing less than ecstatic. For me, the size of my new breasts was completely inconsequential. I had two that matched and I felt whole again.

So THE UGLY is the doubt. 

THE UGLY is the unfounded, yet still very real, fear that I won’t get to ‘reconstructed’. 

THE UGLY is questioning my choice and riding the ups and downs that go along with that second-guessing.

Rather than being able to look beyond scars and discomfort to enjoy my new found symmetry, I find myself on an emotional roller coaster of feeling whole, less than whole and worried about never being whole that directly corresponds to the saline leaking out of my tissue expander and being replaced twice a week.

As I go in for multiple fills on my left side, I work through that accelerated process of happiness, fear and grief.

I go from symmetrical to asymmetrical. And back again.

I go from pain-free to fairly-uncomfortable. And back again.

And I am decidedly not feeling whole.

Yet.

As I type, I know that one day soon, things will be different. Things will be better.

I will feel whole.

That knowledge, forgotten and relearned in a perpetual loop a couple of times a week, helps me see beyond THE GOOD and THE BAD. That knowledge helps me see THE BEAUTY beyond THE UGLY.

THE BEAUTY is, with a little emotional fortitude, a whole lotta reminders and a smidgen of patience I can begin to imagine that wholeness right now.

Springing a Leak was Not in my Recovery Plan

Shocked.

Briefly devastated.

Ticked off.

And it’s all a little surreal.

For every single minute of the almost five weeks since my latest surgery*, I have been thrilled with the two slowly growing mounds just under my pectoral wall. Prior to surgery, I built myself an intense physical recovery regimen and followed it to the letter. Physical recovery from reconstruction has been far more difficult but every moment post-reconstruction has been infinitely emotionally preferable to any moment in time during the active phase of my cancer treatment.

But this morning was indeed challenging.

For the past couple of weeks, I have been diligently visiting the plastic surgeon for 50ml fills in both expanders. And every week, I literally dance out of the office feeling decidedly more whole. Determining your own breast size at the age of 40 completely flips the puberty model but beats the hell out of losing body parts to cancer.

I don’t want big breasts; I’ve never had big breasts; I want to fit in my old bras; I just want to feel whole.

And I am starting to.

But last week I started noticing that during the seven days between fills, my left side appeared to shrink a bit. My left side had delayed reconstruction and the right side reconstruction was immediate, so I attributed the perceived shrinkage to a difference in tissue response.

This morning, during a regular fill appointment, my plastic surgeon asked me if I noticed my left side getting smaller between fills and his question brought one of my biggest reconstruction concerns to the forefront.

It appears as if my left side expander may have a slow leak. And hearing that potential reality brought me to tears. Springing a leak was definitely not in my recovery plan.

As with any situation, I do have options:

• I could immediately swap out expanders in a short surgery.
• I could continue to visit the office for weekly fills and we could overfill the left side regularly to keep it even for the next several months until exchange surgery.
• I could curl up in a little ball and cry that everything has not gone my way.

We filled my left side with 100ml of saline while the right side was dosed it’s typical 50ml. I am now visually even again and I’ll go back next week to evaluate next steps.

In the meantime, I’ve decided to spend some time hearing from others who have been through the not-unheard-of-but-not-terribly-common issue of expander leakage. 

Anyone? Please let me hear from you. What did you do? How did it work out?

*On January 17, 2014, I had a right side mastectomy and began bilateral reconstruction for implants. My left breast (along with a couple of IDC tumors and a couple of lymph nodes) was removed on June 17, 2013.