Author: christine

It’s been more than a  year since my mastectomy. For me, this was the biggest step forward after months of agonizing waiting for a full plan after my initial diagnosis with breast cancer. I was terrified, but I welcomed it. It was action.

It was also really, really hard to bounce back from. Think I’m almost there?

Things I’ve learned in the past 18 months include:

• How to be a little more empathetic.
• Renewed marvel at my husband’s capacity for love, patience, and humor.
• Humbling reminder that my friends are incredible, caring people.
• Support comes in many forms.
• Everybody wants to share their story.

In addition, I have a significantly lower tolerance for bullshit, am trying to master dressing for a new body shape, and have a renewed commitment to exercise. So…progress.

Of course I’m still afraid that recurrence might happen. And will be on Tamoxifen for the next 4-9 years. But I go to the doctor a lot less frequently.  Not sure when/if there’s really a moment when someone blows the “all clear” whistle or if one just gets used to this brand of normal.

 

Last Monday was a big day. In addition to marking a year post-diagnosis, I was scheduled for a screening mammogram of my left breast.

I’d been anticipating this day for months. With a positive report, it seemed I’d be able to breathe a little easier. That maybe Lefty would want to stick around.

All winter I’ve been frustrated and overwhelmed by my ongoing physical limitations and the constant thread of fear and worry that this isn’t over. Every couple of days, I’m smacked upside the head with the reminder that things aren’t really normal: YOU HAVE CANCER. THERE ARE BODY PARTS MISSING. YOUR ARM IS NUMB. TAMOXIFEN WON’T LET YOU SLEEP AT NIGHT.

At a recent check-in with my plastic surgeon, he reminded me that I’ve had multiple surgeries in under a year. That I should go easy on myself. That recovery will come, but to be patient.

I’ve been trying my best to move forward, to find my new normal, but honestly, I’ve been fumbling around.  Reading what other folks in this boat have to say helps. So does napping on weekends.

I was a nervous wreck on Monday. Bless him, Mike came with me and we planned a whole day of distractions for afterward.

Sitting in the little mammogram waiting area, with a host of other mid-age women wearing warmed-up hospital gowns over their jeans and boots, I was overcome with emotion. I couldn’t stop crying. What if they found something? Were any of these women going to get the same call I did a year ago? What if the doctors changed their minds and I needed chemo and radiation, after all? No one noticed that I hogged the institutional box of Kleenex, which was fine but come on, people: put down the phone for a minute.

To get a good image, I’d been told the radiology technician would have to “move the implant out of the way.” Happy to share this maneuver was significantly less horrifying than it sounds. And true to nearly every experience I’ve had at Northwestern, the technician was incredibly kind and tried to ease my anxiety.

And then we went out for breakfast.

On Wednesday night, the results came in: Comparing images over the past 9 years, there have been no changes in the left breast! Come back in a year for another slam-o-gram!

Pass the Kleenex, please. Since the non-news news, we’ve planned a vacation and had some Champagne. And cried.

The long view is that this shit can continue to be hard. Might need to pin up some inspirational quotes at my desk.

Last week I met with a PA to enter Northwestern’s breast cancer survivorship program. This means the baton has been passed from the people running my plan of action to those responsible for maintenance.

Which is great. And informative. And means a lot of things are behind us now.

But I don’t feel like a survivor most of the time. I feel like a barely-hanging-on-er.

This article pretty much sums up how I’m feeling: Of course, cancer sucks….There is no “normal,” except change.

Recovering nicely from surgery 2+ weeks ago.

My plastic surgeon—and the host of nurses, residents, med students on rotation, physician’s assistants, rando hospital people, your mom who seem to be in every appointment I’ve had this year—declared the outcome a success and said that if he didn’t know better, he’d need to check my chart to accurately determine which breast was a rebuild and which was augmented. This means my boobs really, really match. (TMI? Too bad!)

Vascillating between wanting to hibernate and wanting to get out and get on with my life. Survived the holidays and a little bit of travel and seeing friends who were in town. Even went to a late night (for us) rock show.

But hibernation is winning….have you seen the forecast? And I’m still kind of sore and tired. And sweaty.

In a few days I have an appointment to start on my survivorship care plan. Nor really sure what that all entails. Typing those words is surreal. I think it means I can refer to this whole experience in the past tense.

 

Think I’m finally getting used to what’s considered my new normal: New body parts. New scars. Permanent numbness. Shitty side effects of Tamoxifen. Daily PT exercises. New boxes to check on forms at the non-cancer doctor doctor’s office.

And there are all kinds of positive indicators that I’m really leaving this crap-tastic year in the dust.

A few weeks ago, I saw my surgical oncologist, who’s beyond pleased with how everything has turned out. He’s prescribed an annual screening (not diagnostic!) mammogram moving forward. Also saw my kindly GP, who ran a ton of blood work which I’ve passed with flying red and white colors. The hysterectomy is well behind me—my abdomen only gets a little twinge-y if I do too much core workout stuff. Recently got on a plane and had not even a hint of lymphedema. I start in Northwestern’s “survivorship program” next month, which will manage my care over the next several years.

Sounds like this is all wrapping up, right?

But tomorrow I’m going in for another surgery. I’ve been a little evasive about this, but here’s the truth: My boobs don’t match. I want them to match. (They did before, dammit.)This last surgery is simply to swap the augmentation implant with one that will provide symmetry against the reconstruction side of affairs. Same excellent plastic surgeon, using the same scar location, general anesthesia but outpatient, and limited recovery time.

To be honest, I’ve been feeling really anxious about tomorrow. But I know this is what I want. Because it’s my choice and up until now, none of this has been.

Two post-op appointments later and the news for my parts is pretty good.

Gynecologist has cleared me for all activity (she means SWIMMING, people) and said to come back in a year. Plastic surgeon wants to do one more procedure, scheduled for just before Christmas.

As for my state of mind? I’m a literal hot mess of a headcase.

Think I’m finally starting to process everything that’s gone down this past year.

And the tamoxifen-induced hot flashes are no joke: From chilly in our late fall weather one minute to dripping with sweat the next.

Add insomnia, the ennui that visits this time of year like fucking clockwork, a feeling I should be doing more with my life after this wakeup call, the fact that we need a vacation…I seem to add up to a well-documented cliche.

While I clearly went back to work much too soon—holy mother of pearl, the late afternoon fatigue and pain were startling—am happy to report that news on my prognosis is nothing but very, very good.

Met with my oncologist last Monday for a 3-month checkup. All looks good. Come back next quarter for another look-see. No further tests or scans or blood draws recommended.

So….that’s it? Our relief was palpable.

And, honestly, a little unsettling: I was not prepared for the onslaught of emotion that came afterward. Is it over? Are they sure? (Of course they’re not: a daily dose of tamoxifen for 5 years says they are not sure.)

Why are the tears so quick now, unlike before?

Is it okay that I still think this whole thing is a raw deal, even though I know it could have been much, much worse? Like it was for friends and family who aren’t here anymore? And the dears who are here but are facing much worse?

Can’t even address the mind/body trick that is having a hysterectomy that was not of my choosing.

Apologies but I’m more than a little verklempt. Talk amongst yourselves.

Current situation: Feeling mostly better, but still pretty sore, trying not to be depressed, clinging to gratitude, going back to work on Monday.

On gratitude, here’s a list….because I am a list-lover and they help me:

• My steadfast husband, whose love, patience, and encouragement are getting me through this year.
• A breast cancer prognosis that’s beyond positive.
• Certainly not worried about uterine cancer anymore.
• Skilled doctors and caring, gentle nurses and technicians.
• A life that largely shields me from having to compromise on the care and procedures I need. I have good insurance. I can afford to take a cab if I need to.
• My friends have stepped up in ways that are truly humbling. My coworkers are genuinely supportive.

On feeling depressed, I’ve really been struggling. This round has felt like a big slide backwards on the physical progress I’d made up to September 19th.

Seriously: Fuck these limitations, side effects, stitches, scabs, swelling, and scar tissue. And walking slowly among people who don’t notice or care. And feeling like I can’t do anything especially well right now.

Well, that sure felt good.

Had my first post-op appointment with the plastic surgeon yesterday.

Bandages and plastic wrappings were gently removed, along with some stitches. My surgeon thought everything looked good and that someday soon, I’ll  be done with this round-the-clock sports bra routine and won’t need a bra at all because “your breasts aren’t going anywhere.” Hell, yeah.

He cautioned that I should keep wearing compression something something on my abdomen and legs to ward off swelling. As I’m ready to burn the itchy, stained abdominal binder I’ve been sporting 24/7 for the past week, I was a little disappointed.

“Do you know Spanx?” he asked.

Dude, please. Every woman in America knows Spanx. Say what you will about capitalizing on the DIY behavior many of us had been doing for years: snaps to Sara Blakely for her tenacity. And of course I have some Spanx shorts things in a drawer somewhere.

But now that it’s really, truly fall I think what I need are leggings. Only…high-waisted ones that would cover my incisions. Is that a thing? I don’t really do leggings. But I was already that lady wearing sweatpants in public. And had 2 hours before my next doc appointment. And Nordstrom is a half mile from Northwestern.

So I nervously crept through crowds of clueless shoppers who DNGAF about the less-mobile among them (high sign to all the elders creeping along, too—nice work with that cane-slash-weapon, ma’am) until I reached leggings nirvana on the 3rd floor.

So I bought some. And am wearing some now. But not as pants. Never would I ever.

Been a rough week. Lots of napping and wincing and gimping around.

I no longer require Mike’s assistance to get up, but every sneeze, cough, and laugh issues a cruel stab of reality.

Have also developed a serious love/hate with the freaky-deaky world of compression garments.