Life

Why am I Still Crying?

/ Jennifer / 14 Comments

 

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I don’t know what’s right and what’s real anymore
I don’t know how I’m meant to feel anymore
When do you think it will all become clear
And I’ll be taken over by the fear
-Lily Allen, “The Fear”

Today I had a followup appointment with my surgeon. The meeting went well–he said everything was healing up nicely and he went over my pathology report again, reiterating what great news it contained. All in all, pretty darn good.

So, why did I spend half the drive home crying?

I should be really happy right now. Yes, I’m still in some pretty wicked pain, and my chest is a hot mess, but that will all eventually change. I’m “cancer-free;” I should be ecstatic, right? I certainly shouldn’t be boo-hooing in the car.

And yet, here I am. My emotions are all over the place. I don’t know how I’m supposed to go from being the cancer patient back to a regular person. I’m too afraid of recurrence to let my guard down. And every time I catch a glimpse of my reflection in a mirror, I’m taken aback–the mind’s eye vision of myself doesn’t fit how I actually look with my barely-there growing-in hair, pale skin and flat chest.

And even nuttier, I’m actually kind of sad that my time with my doctors is starting to wind down. I’ve grown kind of attached to these people, having seen them so much the past few months. Not to mention the fact that they literally saved my life.

I’ve heard people say that the treatment of cancer is hard, but figuring out life after treatment can be just as difficult. I always used to think that sounded kind of weird, but now I’m starting to understand what they were saying.

I don’t know how to proceed. I’m not sure how to process all of this. I don’t know how to be me anymore.

There’s a flyer in my oncologist’s office called “Finding Your New Normal.” I guess that’s what I have to do now. I won’t ever be able to go back to the old me.

 

 

Mastectomy, Simple, Complete

/ Jennifer / 10 Comments

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Yesterday I met with my surgeon to discuss my upcoming bilateral mastectomy and lymph node removal/biopsy. I now have a surgery date, and it’s very soon.

When I got home last night, a notice from my insurance company awaited me, informing me my surgery had been approved. In the section with the coding for the procedures, it said: “Mastectomy, simple, complete.”

While it will be complete, nothing about this is simple.

When I received my diagnosis back in July, I immediately feared I’d need a mastectomy. I’d run through all the scenarios in my mind by the time my doctors told me a much less invasive lumpectomy would be just as effective. Cue the relief.

Of course, that was before I found out my BRCA2-positive status. That changed everything.

Now I’m facing a bilateral (double) mastectomy, along with the removal of some of the lymph nodes in my left armpit (the side where my cancer occurred). Those nodes will be checked for cancer cells.

I’ve opted for a nipple-sparing procedure with reconstruction. This basically means that all the tissue inside (which reaches up nearly to my collar bone and around the sides of my chest) will be removed. Then, the plastic surgeon will insert expanders, which are essentially deflated implants that will be injected with fluid over a period of weeks to allow my skin to heal and prepare for the insertion of the permanent implants.

My surgeon said the recovery process will last 3-4 weeks. And several of those weeks I’ll have drains on either side of my chest to remove fluid that builds up in the space between my healing skin and the expanders. I’ll have to empty these daily. Blech.

Obviously, my mobility will be seriously affected during recovery, and I won’t be able to drive for at least two weeks after. I guess I’ll finally have a chance to catch up on all those Netflix shows I’ve been meaning to watch.

The pain, lack of mobility and even the disgusting drains (have I mentioned how gross they are to me?) aren’t what I’m most worried about, though. Per usual, my son is my biggest concern.

I won’t be able to lift much of anything during recovery, which means picking him up is a no-no. This is problematic because my son is very attached to me. I pick him up multiple times a day. And on top of that, he’s constantly in my lap, falls asleep on my chest and ends up in bed with me most nights. All of that will have to change. Like the end of breastfeeding, I know this is going to be a fairly difficult adjustment for him. He won’t understand. He will cry. And I probably will, too.

So, yes, this mastectomy will be complete. But it is far from simple.

Winks from God

/ Jennifer / 10 Comments

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The other day, my son and I stopped into Starbucks for a little treat. As we settled in at a table outside, a woman seated near us walked over and asked me how I was doing.

This might seem a bit odd since I didn’t know her, but I was just wearing a ball cap that day (as I do most weekends), so it was clear I’d lost my hair. I knew she could easily see that I’d been through chemo.

I told her how treatment was going, and she offered some words of encouragement. Then I asked her if she’d been through this, and she admitted that she was a breast cancer survivor, as well, and told me her story.

This isn’t the first time this has happened. Since I started treatment and lost my hair, I’ve had several complete strangers approach me in public with words of encouragement. And these strangers were all survivors themselves.

A few weeks ago a woman (also a survivor) came up to me in a restaurant and told me to keep up the fight. And on the day before my brain MRI, a woman (another survivor) in the drug store told me I was going to be OK–a message I desperately needed to hear that day.

As I thanked the lady at Starbucks for coming over to talk, I told her this keeps happening to me. She just smiled and said, “Yes, it happened to me, too. I call them winks from God.”

I love that. And I also love that there’s this inherent sisterhood among women who’ve faced this nasty disease. It’s as if we have a sixth sense about one another, and can spot a sister from a mile away. And what’s even cooler is we’re not afraid to reach out and offer love and support, even to someone we don’t know.

I’ve decided that once I get to the other side of this, I will do the same for other women I encounter. Being someone else’s wink from God is the least I can do.

The Ones Who Came Before Me

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I’m a member of a Facebook group for women with breast cancer, and yesterday one of the women posted a gratitude thread. There were all the usual sentiments–gratitude for family, friends, the group itself, etc.–but one really struck me. I’m paraphrasing, but she said she was thankful for all the women who came before us; the ones who did the clinical trials that led to the drugs that fight our cancer, the ones who allowed doctors and researchers to discover new breakthroughs, the ones who survived and give us hope, and the ones who didn’t, reminding everyone how serious this disease is.

Her comment reminded me of the above photo, which I took last week while working the High Point Market (a big bi-annual furniture trade show here in NC, for the uninitiated).

I was taking a quick lunch break when I noticed the huge pink firetruck parked near a group of food trucks. After getting my food, I found a seat next to the truck to enjoy my meal. Sitting alone on that bench, I started reading all the messages written on the truck. There were so many–it was almost completely covered!

The more I read, the more emotional I got. There were so many in memory of someone lost–mothers, grandmothers, sisters, aunts, wives, friends. We all know that cancer can kill us. This is an undeniable fact. But, in the interest of self-preservation and not going completely mad with fear and anxiety, I try to push that fact out of my mind as much as possible.

Seeing those names reminded me the disease I’m fighting takes women just like me all the time. In the middle of Pinktober, it was both a scary and good reminder–breast cancer is not all pink ribbons and festive charity walks. It’s a real, deadly disease. It ravages bodies. It decimates finances. It breaks up families. The lucky ones–the survivors–bear the scars and carry an unseen fear (will it return?) with them forever. The others lose it all.

But those weren’t the only names I read. I also saw the survivors. The ones who wrote how many years they’d been cancer-free. The ones who left uplifting messages reminding us to keep up the fight. The survivors keep me going.

So like my fellow group member, I also would like to thank the ones who came before us. No matter the outcome, their experiences made a difference and I am thankful for those courageous women.

A Change of Plans

/ Jennifer / 2 Comments

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I haven’t updated my treatment status in a while, and that’s mostly because it’s been sort of in flux the past month.

As I mentioned a few posts back, I got really sick right after starting Taxol. This was the drug that was supposed to be “a piece of cake” compared to my first round of chemo with the Adriamycin/Cytoxin cocktail.

Of course, I’d be the special snowflake that proves that wrong.

Three weeks after that first dose, and after finally having my two-week fever and headache subside, I went in for treatment only to find out my white blood cell count was still incredibly low. This is not normal for this drug.

So, my oncologist came in to tell me that I obviously cannot tolerate Taxol (and it was the source of my fever and other problems), and they are very hesitant to continue giving it to me because if it hits my immune system this hard (counts still low three full weeks after treatment), then it could cause damage to my bone marrow.

I already had an appointment with my surgeon scheduled for the following Monday, so my oncologist ordered a rush MRI for that day so the results would be ready for my surgery appointment. So, for the second time that week, I climbed into the ol’ MRI tube, this time to scan my chest (at least they gave me headphones and let me listen to Pandora this time around–’80s pop music helps make the MRI go by a lot faster).

That Monday, my surgeon shared the results. My tumors were pretty much undetectable, and the right side was totally clear. The only thing he noticed was a tiny mass on the left side that he said looked benign. It will get removed during surgery.

That was a week ago, and now we’re just waiting for my immune system to get back on track to schedule my surgery, which could happen as soon as this month or next month. Does that kind of throw a wrench into the holidays? Yes. But, I am happy to get it over with a bit sooner, and I’m even happier to hopefully be done with chemo. (Although, if there is cancer in the pathology report from the tissue they remove during surgery, they may order more chemo.)

I asked my oncologist’s PA what discontinuing chemo (I still had 11 doses of Taxol scheduled) means for my treatment. She told me that Taxol gives me a 3% better chance of the cancer not recurring. While it sucks to lose that, saving my bone marrow is more important at this point. She also told me that the anti-estrogen meds I’ll be on for the next 5-10 years (my cancer is estrogen receptive, which basically means that estrogen feeds it) increase my chances of it not recurring by 50%, so that made me feel a little better.

So, that’s where we are right now. I’m still sort of in limbo as far as when the next steps happen, but I know they’ll come soon. In the meantime, I’m trying to mentally prepare myself for surgery and all that comes with it. Everyone tells me it’s not as bad as chemo, but I just don’t know.

Thirty-eight

/ Jennifer / Leave a comment

My birthday was last week–the big 3-8.

I’m not a huge birthday person. I like my birthday, but I never have a party or any kind of big to-do over it. 

I guess this year I could have really blown it out, all things considered, but I kept it low-key, spending the day with my son followed by a chill girls’ night.

In addition to that, I received so many kind wishes from family and friends, which really made the day special. And those wishes seemed a little extra-sweet this year. It’s funny how a bad medical diagnosis makes you realize the significance of things. It helps you see how each birthday truly is a gift. 

So, while I didn’t have a huge party, I spent the day with people I love. And despite everything I have going on right now, that made this birthday one of the best yet.

Lucky

/ Jennifer / 5 Comments

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It feels kind of odd to say this considering what I’m going through right now, but I am a very lucky person.

No, I’m not generally the one who wins the big giveaway, and I’ve been in a lottery pool for years and have yet to hit it big.

I guess lucky isn’t exactly the right word. Fortunate might be more correct.

When I got my cancer diagnosis, I felt just the opposite. I felt marked. Cursed. Unlucky.

But then a strange thing happened–the outpouring of love and support began to wash over me.

In the days, weeks and months since my diagnosis, I have experienced a level of love and support I never thought possible. From the unfailing love of my husband and family to the constant cheering of close friends to the unrelenting support of my coworkers to the texts, emails, cards and Facebook messages of former coworkers, high school classmates and friends-of-friends, the level of love, kindness and concern I’ve received has truly humbled me.

At first, I didn’t really know how to handle it. I got tired of people constantly asking how I was. I even had the audacity to complain about all the attention (I know, could I have been a bigger, more ungrateful brat?). But once I got over the initial flurry, my heart just swelled with the love I’ve felt from others. It has moved me to happy tears more than once, and it continually restores my faith in humanity.

Whether it’s a container of homemade soup from a dear friend, or a comment from a complete stranger on this very blog, these gestures mean so much to me. They help me get through the rough days, and they remind me that there are so many good people in this world, and I am so very lucky to know and be touched by so many of them.

The Sick Blanket

/ Jennifer / 18 Comments
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This blanket has seen better days.

When I was a kid, we had a special blanket in our house that we referred to as the “sick blanket.” Well-worn to a buttery softness, its faded 1960s floral pattern seemed to instantly soothe any invalid wrapped within its calming embrace.

Since I was diagnosed, several people have given me blankets. And while these new blankets are cozy and lovely, when I feel really cruddy I find myself reaching for my own “sick blanket.” A gift from my mother when I went away to college, the faded blue afghan is frayed and a bit ratty, but it’s also incredibly comforting.

I’ve spent a lot of time with the “sick blanket” the past two weeks. I started Taxol on Sept. 28, and two days later I started feeling bad. I was running a fever, which made me feel totally run-down. I took some Tylenol and a nap and waited for it to pass.

Fast-forward two weeks. I’ve been fighting a fever this whole time, which came with a headache, chills and other fun symptoms. I went to the doctor several times and got poked and prodded more than once to do all sorts of tests to determine the source of the fever. After multiple rounds of clean lab work, my doctors were perplexed. They gave me an antibiotic to try, but weren’t sure it would actually do anything since they couldn’t find any sign of infection.

On Monday of this week, I called to let them know it was still going on, and my oncologist decided I should have a brain MRI. Cue the stomach drop. This is not a test you want to have ordered. I immediately lost it, my mind going to all kinds of dark places and scenarios.

Yesterday, I went in for my weekly consult and to get chemo. My lab results showed my white blood cell count was too low, so they wouldn’t give me chemo. And the PA whom I usually see told me that my oncologist now wants to do a PET scan if the MRI results come back clean. Cue more freak-out.

I straight-up asked her if they think I have more cancer, and she said my oncologist has concerns, but this doesn’t necessarily mean there’s anything going on. I also asked her if this could possibly be a result of the Taxol. She said that was a possibility and that my oncologist’s partner had a patient who basically had a fever the entire time she was on Taxol. But, she said they wanted that to be the last box they check off, after they rule out everything else.

Rationally, I know it’s good to do these tests to be sure there’s not something else happening. If there is, we need to know so we can know exactly how to proceed. But I am scared. SO scared. The thought of more cancer showing up on one of these tests sends me into a tailspin. It makes me nauseous to think about it. I hope and pray this is just my body’s reaction to the Taxol, because that’s something I can handle. More cancer is not.

I’m feeling much better today (and have been progressively for the past few days). My fever and headache are mostly gone, and while I’m still wiped out from all of this, I am actually at work today and feeling halfway normal. I’m hoping this is all a good sign.

In the meantime, I wait. I’ll probably spend more time with the “sick blanket” this weekend, too. I’m not feeling as sick, but I still need the comfort.

Five Years

/ Jennifer / 3 Comments

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Five years ago today, I was getting married.

It’s amazing how fast five years of marriage and nearly 10 years together have gone by. Totally cliched to say, but true nonetheless.

This is one of my favorite photos from our wedding day. It’s not one of the beautiful professional shots we paid for, but rather a grainy cell phone photo taken by a friend. But I love the pure joy it captures. And how it captures us as both individuals and a couple. Rodney throwing up the horns, me grinning like a fool–that’s us at our goofy best. And at the center, our hands intertwined, facing a roomful of people as one.

We’ve been laughing today at how unromantic our anniversary has been, thus far. We both felt kind of cruddy when we woke up, and we spent much of the day putting toys together and running errands for Alex’s birthday party tomorrow. Right now, Rodney’s snoring on the couch in front of a football game on TV, and I’m wrapped in a blanket on the recliner after my own nap.

But that’s real life, and real life is what marriage is truly all about. I feel sorry for people who are constantly chasing some Champagne-and-roses Hollywood ideal. Real marriage, and real love, is in the boring moments, the hard moments, the little moments. It’s having someone by your side who will hold your hand as a doctor manually breaks your water (which is super-fun, in case you’re wondering) and then later as you’re cut open on an operating table to deliver your child (terrifying and yet amazing). It’s someone who will sit up with you in the middle of the night as you figure out breastfeeding a screaming infant, and who will basically feed you by hand when said infant insists on being fed when you’re trying to eat. It’s having someone who will buzz all your hair off, and still look at you like you’re beautiful even when you’re bald and sick. It’s someone who will make you laugh through all of this.

We’ve been through quite a bit in our five years of marriage, and I am so thankful every day to have him there with me every step of the way. Our relationship isn’t perfect, but it’s ours and it’s good, and in a time of so much uncertainty, I’m grateful to have something (and someone) in my life I can always count on.

Hitting Close to Home

/ Jennifer / 4 Comments

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The Modern Love column is one of my favorite features in The New York Times. For the unfamiliar, it’s a weekly essay series that explores the topic of love in all its various forms. It’s often heartbreaking, revelatory and even sometimes funny.

Last week’s essay, though, struck me deeper than any has in the past. The writer is fighting metastatic breast cancer that recurred in her spine, the tumor actually breaking one of her vertebrae.

Not only is she fighting cancer, but she’s also my age. And she lives in my city. She’s the mom of two little boys, and she worked as a writer and editor. The parallels between our lives were striking. Except, for one–I am lucky enough to have a good prognosis (at this time, at least), while hers is far more grim.

I have cried so much for this woman I don’t even know. I’ve cried for her husband. I’ve cried for her babies. I’ve wondered if our paths have crossed at the cancer center. I’ve wondered if we have any mutual friends. I’ve wondered if there’s any way I could connect to her, to tell her I’m so sorry, to give her a hug, to ask if she needs anything.

There’s one paragraph of this beautifully-written story that I keep coming back to. In talking about her sons, the author says this:

“Their very existence is the one dark piece I cannot get right with in all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.”

The tears are welling in my eyes right now reading this. She absolutely captured the feelings that a mother has when facing the specter of death. I know exactly how she feels. I can handle anything else about my diagnosis and all the scary possibilities that come with it, but the possibility of not being there for my child is the one thing I cannot bear.

So, I cry again for her, and for her boys. And I hope that somehow she can feel my love and empathy floating across our city to her.