The thing about cancer (and other hard things) is surviving one moment at a time

I’ll be honest and confess that I’ve been struggling with how to share what recovery has been like for me.

I want desperately to be a beacon of positivity, and I’d say that for the most part, I’ve been successful in keeping a good attitude. But it has been very hard, too, and I don’t want to put on a facade and make it seem like things are okay 100% of the time. In reality, I’m learning to live minute to minute and ride whatever emotional wave I’m experiencing in that moment.

Sometimes you have to laugh at what’s going on – for example the other day I started craving Annie’s Homegrown gummy bunnies and ended up falling on the kitchen floor and not being able to get up. I started laughing so hard I cried, as Bear attempted to lift me up by my butt. I also got so scared by the air conditioning vent falling out of the window that I went into hysterics again and couldn’t stop laughing while my mom and Bear looked at me like I was bonkers. And, this morning I somehow ended up in the ridiculous situation of wearing a black plastic bag and sitting on a folding chair in the shower while Bear heroically washed my hair.

But the truth is, this is hard.

I’m afraid of chemo and radiation. I’m scared this isn’t the hardest part of this “journey.” I’m afraid of metastasis and I’m afraid of death. I find it easy to go down a rabbit hole of anxiety and not as easy to climb my way out of it.

And on top of the emotional stuff, I was not prepared physically for what a double mastectomy would actually be like. I’ve never had major surgery, and I kept hearing “you’re young, it won’t be that bad.”

Here are some things I expected:

  • I used to have major migraines, and when you take migraine medication, the pain goes away. I expected taking a bunch of opioids would make my pain go away.
  • I thought every day would get easier. I expected that as you heal, the pain is a bit less every day and before you know it, things are okay.
  • I expected to be able to do some things by myself. Like lift my own water bottle, or pull up my own pants.
  • I expected that after a week or so, I’d be regaining my strength by going on long walks with my friends.

Unfortunately, none of this was true.

The truth is, recovery is not as simple as “every day gets a little better.” Some days are a lot better than the day before, and because of that, I maybe do a little too much. And the next day I pay for it with muscle spasms, stabbing pains where my breasts used to be, and exhaustion.

This was very frustrating and deflating for me, until Bear sat down and explained recovery to me.

He explained that when you injure yourself, you have to work every day on small exercises to heal. And the next day, it hurts worse for awhile because you worked your injury the day before. And that while things do improve every day, they still start off hard. And if you overdo it, the next day you’ll feel it. Your body will be stiff, and you have to work your way through the pain all over again. This is all normal.

Learning that was such a relief.

He also suggested that the key to not getting overwhelmed is to set small, attainable goals every day. Some days my goals are things like, “respond to three emails.” Other days, they are, “watch two episodes of Game of Thrones and take a nap.” Today it was, “survive the first migraine I’ve had in seven years.”

In an attempt to avoid the rabbit hole of worrying about the future too much, I decided to make “keep the faith” my #1 goal every day.

Keeping faith in the face of something life threatening is extremely hard. Through my divorce, my faith was strong, because I know that I am strong. No matter what crap I had to deal with on a daily basis, I knew I’d get through it. But cancer is different, because it doesn’t give a crap how strong you are. It kills strong people every day. During my migraine this morning, I cried for my friend Brandi and my aunt Lois, two strong women who lost their lives to breast cancer far too young. Not identifying with them, especially when faced with a positive lymph node, is proving very difficult. When I finished crying for them, and for myself, I decided that I needed a positive mantra to focus on any time I start to spiral out of control. This is how I’m going to stay positive.

The mantra is:

When I was 35, I kicked the shit out of cancer, and it never came back.

Surviving the good or okay moments is a piece of cake. But during any hard time, whether it be recovery from addiction or illness or divorce, there are hard moments. And in those moments, it’s about surviving just that moment.

This is what I’ve decided to say to myself in the moments that aren’t good.

I’ll let you know if it works.

As It Turns Out, I Actually Do Have Cancer

Right before I left for the hospital for my double mastectomy on Thursday morning, I started to compose a post called, “I Don’t Feel Sick, So How Do I Have Cancer?”

The day before, I had a lot of ups and downs, ranging from “OMG this is the last full day my boobs will have on this planet!” to “OMG get these off” to “I can’t believe this is happening.”

One of the strangest things about cancer is that since my diagnosis, I’ve felt completely normal. I don’t feel like anything is wrong with me, so it’s easy to start wondering whether three types of imaging and two biopsies are actually, in fact, wrong.

But Thursday evening, however, things felt a lot different.

I woke up in the recovery unit breast-less and asked my mom what the breast surgeon had found when she biopsied my sentinel node. My mother looked at me sadly and said, “it’s invasive, Sari. It is in at least one of your lymph nodes.”

Oddly, I wasn’t surprised. For weeks, I’d been saying that I could feel it in there. I could feel it moving toward my armpit and inching toward my lymph nodes. I knew it was spreading, even though it wasn’t “supposed to.”

Yesterday as I was getting released from the hospital after 4 nights, the breast surgeon visited me on her rounds. That’s when I finally cried.

I cried because I am thankful I have such a capable breast surgeon. I cried because I met her before I knew I had cancer, and she was the one who quantified my risks, came up with a plan for early screenings, and warned me about how many false positives there can be. She was the one who called to say, “they think they found something funny on your very first MRI,” and there to say “I didn’t want or expect to see you with this diagnosis so soon.”

And in the hospital yesterday, she was there to confirm what I knew without a doubt all along: if I hadn’t caught this now, it would have killed me.

I had no lump. I had “DCIS” which we called “baby cancer.” Not real cancer because I found it really, really early. Nothing much to worry about – the cancer was contained, and once I removed it, it would be gone forever.

But as it turned out, I had a cancer that was ready to travel. I’m praying it never got the chance, that it reached that first node and stopped. I won’t know how bad the cancer is until we get the pathology results. But we do know that it’s bad – it’s not baby cancer.

So it turns out I have cancer. The kind of cancer that kills. The kind that likely requires both chemo and radiation. And in a dark moment during a particularly nauseating and painful episode post surgery, I thought, “I can’t do this. It’s too much pain. How can I go through this AND chemo and radiation? What if there’s no point? What if it’s too late, and it gets me like it got Brandi?” But like kids who think high school is the be-all-end-all, I didn’t have perspective. Now I’m seeing myself making progress every day and I know I will make it through this.

I am clinging to the survivors of “bad” cancer and remembering that yes, this cancer kills people. But also, sometimes it doesn’t. And in this case, I’m choosing to believe that it won’t.

The flowers in the featured image are from my high school friend Nick. Thanks for the cheer, Nick.

Grace Under Pressure Before a Double Mastectomy

The closer I get to this surgery (now T minus 6 days), the harder it is to handle my stress. I lay awake at 2:30 in the morning counting off the things that need to be done before I have limited use of my arms, and attempting to avoid thinking about how afraid I am of anesthesia.

When I wake up, my dread feels like it’s sitting on my chest, making it hard to breathe. I’m living minute to minute, trying not to break down in tears. It takes 16 minutes to drive my daughter to school, during which I’m trying to find the joy in her singing instead of letting the noise totally overwhelm me.

Because right now, I am easily overwhelmed – and it’s not just the noise. The cluttered state of my small house is hanging over me like a black cloud. I am obsessing over getting a storage space and moving the excess out as soon as possible. There’s too much stuff to do and not enough time to do it in, and I’m fighting the feeling that I honestly have no idea what I’m getting myself into, so I’m probably missing something necessary on my to do list.

Distractions help a ton, and my friends have been doing a great job (especially my friend Liz, for whom I am eternally grateful). But as soon as I’m alone — which has been inevitable, because I am still a single mom, technically — the anxiety comes rushing back immediately. I’m a relatively independent person, so my clinginess to other people is hard to get used to and is making me feel insecure. The good news is that my mom came last night, and Bear is here, so I won’t be alone again (even if it requires handcuffing one or both of them to the coffee table, which I’m not above doing).

People have been genuinely wonderful to me. Yesterday a co-worker sat me down, looked me in the eye, and asked me what he could do to help me. And he meant it.

So I did the only logical thing – I cried.

My reason for sharing this emotional roller coaster is not to garner sympathy or pity – in fact, I really really don’t want either of those. I just want to share what this experience has made me aware of, which is that we truly have no idea what other people are going through.

On the outside, I look totally normal – just another working mom dropping her 7 year-old off at school. To most of the other parents, I look the same  as I did last year. For those who know what’s going on, I look like I’m handling it all surprisingly well. Obviously that’s not entirely true.

I am choosing to share this experience, but a lot of people don’t tell anyone; they keep their struggles inside or only share with a small group of people. It’s a reminder to me, and hopefully to everyone, to be kind to everyone you meet.

Though full disclosure: if you make eye contact, I might start crying. Don’t be alarmed.

The bouquet of mini roses in the featured image is from my wonderful group of bees, who have totally lifted my spirits. Thanks guys.

How Breast Cancer is Affecting My Body Image, Phase 1

Standing in the plastic surgeon’s office a few weeks ago, I held open my gown as he inspected “what we’re starting with.”

“You’re not a candidate for breast reconstruction using your own tissue,” he said. “You don’t have enough fat to work with.”

I started laughing. “I think there’s a compliment in there somewhere,” I said. “I’ll totally take it.”

He told me to close my gown, then announced, “you’ll be able to choose the final size of your reconstructed breasts, and we’ll definitely make them perkier.”

That did not strike me as a compliment.

His comment didn’t hurt my feelings, but it probably could have. And after thinking about that, the relationship we have with our bodies suddenly struck me as odd.

If I’m going to feel good about myself for not having “enough” fat, or bad about myself for having sagging breasts, both of which are a product of nature, shouldn’t I also feel bad about myself for having cancer? And since I don’t feel bad about myself for having cancer, why should I feel bad about myself for having cellulite on my legs, which is a product of having my beautiful child? Or the 40% of my hair that suddenly started turning gray at 30?

When this is over, I will be left with something that resembles breasts while I’m wearing clothes, but will look totally different without. Accepting this has been a crazy emotional roller coaster. Devastation at not having any feeling in my breasts ever again. Sadness because I won’t have nipples (or at least, not real ones). Fear that I won’t look the way I want to anymore. Wondering if I won’t know what clothes looks good on me anymore. Will I still be an hourglass? Or will I now be a pear? What do pear shapes wear, anyway? Can I wear ruffled shirts, or belts, which previously made me look heavy? Will my favorite high waisted jeans look weird and out of proportion? Will any of my shirts even fit?

It might not be the perfect body with the perkiest breasts, but it’s mine. The body I will soon have is not what nature gave me, and that’s sort of a weird thought. If it’s that easy to change it – a little bit of cancer here, a surgery (or three) there – what does it even matter what it looks like? It’s not a reflection of who I am. I learn and change with every challenge that’s thrown my way, sure. But nothing can flat-out change who I actually am – especially not an 8 hour surgery.

I lost a friend to breast cancer in January, and she once told me that cancer took the two things that she felt she was known for: big boobs and long hair. The thing that cancer didn’t take from her – and never could, even after it took her life – was her beautiful soul. She was one of the most lovable people I’ve ever met, and no matter what cancer took from her, it couldn’t take that. She was still gorgeous, inside and out, because of her vibrancy and her magic.

This relationship I have with my body is changing, and it’ll be an evolution. I’m in the beginning stages now, trying to wrap my mind around what it will mean to lose a part of myself that has come to define my body for me.

If I can take anything from this experience, I guess it would be that. That our bodies are just bodies, and as long as they’re functioning well, they’re beautiful. And even when they’re no longer functioning, we are still beautiful.

 

The necklace in the featured photo was a gift from my friend Nadine and was made by my friend Laura. The back says, “Nevertheless, she persisted,” which the feminist in me loves. It’s also a reminder to advocate for yourself. Had I not pushed for early detection, my cancer would be much worse. Get your exams!

The Silver Lining of Getting Diagnosed with Breast Cancer at 34

When I tell people I’ve been diagnosed with breast cancer, the reaction is usually something like, “how awful! You’re so young!” And on that point, I can totally agree. However, I am also incredibly, incredibly lucky. When it comes to getting breast cancer, I’m blessed to have been diagnosed when I did and how I did.

And throughout this experience, that’s what I’m choosing to focus on.

Because of my family history, I pushed to get early screenings. I have good health insurance and a doctor, so I was able to ask for this. I have the money to pay for the MRI, diagnostic mammogram, ultrasound, and biopsies. This is a privilege I will never, ever take for granted. And because of this privilege, my first breast MRI found my cancer when it’s most likely in its beginning stages. Had I not had access to early screenings, this 5 inch area would have grown until I developed other symptoms: a lump, a dimple, who knows. It could have taken years, and by then, it might have been too late.

Yes, I am 34. But because I am 34, I still have my parents. My mom will use her nursing background to handle all my post-surgery “gross stuff.” (Thanks Mom.) Both my parents have and will be with me the entire time.

Because I am 34, I have an incredible partner. This time last year, I found one of the most amazing men I’ve ever met, and I am so thankful to have him by my side. What if I had a different partner, one who wasn’t a total rock? I have never doubted his commitment and desire to support me, and for that I am so grateful. I don’t have enough words for how grateful.

Because I am 34, I have an excellent job working for a company that has been supportive from Day 1. The day I was diagnosed, the CEO of Red Tricycle brought me a huge bag of food and flowers, and she has continued to support me and relieve my worries since. What if I’d been diagnosed while I was freelancing? Or if I worked for someone who cared less or was less kind? What if I had a new job, and I hadn’t established myself as a loyal, hard worker?

Because I’m 34, I have a solid group of friends who I have become very close to. These friends have brought me joy when I was feeling down, made my daughter’s birthday more special, made me dinner, snuck breakfast parfaits into my fridge, made phone calls to doctors on my behalf, and lent an ear any time I needed it. They are my tribe.

Because I am 34, I am healthy and will recover more easily than if I were older.

For the record, “a free boob job” or “perky boobs for the rest of my life” are not silver linings of this diagnosis. That’s like saying a prothesis is a “perk” of having a leg amputated. I will never have sensation in my breasts again. A part of my body that used to be for my enjoyment and for nursing my children will soon serve the sole purpose of making my body look “normal” to others.

That is a major loss, not one of the perks. But because I am privileged, and because I was persistent, that is the price I will pay to live. And for that, I am eternally grateful.

 

The flowers in the featured photo were a gift from a family that cares a lot about Bear and gave us the most thoughtful gifts. They also run a really cool tour agency in San Francisco featuring vintage VW buses with eyelashes.

Cancer = waiting. A lot.

Originally on Instagram and Facebook.

hygge-living-room
Portrait of hygge.
One of the most challenging things about cancer is that there’s so much waiting. Waiting for screenings. Waiting for results. Waiting for biopsies. Waiting for biopsy results. Waiting for a phone call to schedule a surgery, which you’ll have to – you guessed it – wait for.And in the meantime, you have to figure out how to live your life, business as usual.

Sometimes things seem so normal that you forget that your body has betrayed you, and that you have to amputate part of it in response. But most of the time, you’re trying to go grocery shopping, format spreadsheets, and bake birthday cakes while attempting to ignore your constant state of anxiety and foreboding.
Last week I met with a friend of mine who was diagnosed with breast cancer at 30. The next day, another started chemo. Today, another was diagnosed. I don’t understand what’s happening to us or why. Why did another friend lose her life to this at the beginning of the year? We are young women in our 30s. This should not be something we have to fear. We shouldn’t have to explain to our small children why we are going to the hospital to have our breasts removed. Deal with the devastation of amputating a huge part of who we are as women. Handle the fear of pain, sickness, financial ruin, and, for some of us, of leaving our children motherless.

And the waiting.

Waiting for what feels like decades to find out what’s going to happen, when it’s going to happen, and exactly how bad it is.

So that’s where I’m at right now. Sitting in the unknown, trying to be patient, and trying not to think about the what or the how until I know the when.

Cancer sucks.

I am 34 and I have breast cancer

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Originally on Instagram and Facebook.

Earlier today I debated whether or not I wanted to post this. I asked myself, “what’s the point of telling everyone all this?” I didn’t think there was one, and I’m still not sure if there is.

I guess I decided to post it for my friends and family, who want to help but can’t be here all the time, who reach out and ask how I’m doing and want to know if I’m okay. I *am* okay. Also, it’s good to let people know what you’re going through. To not to post the highlight reel all the time, or protect yourself (and others) from the crappy stuff by not posting anything at all.

So here goes.

Three weeks ago, I was blindsided by news that I knew I’d get sooner or later. I just expected to get it *later.* I am now the youngest woman in my family (out of five) to have been diagnosed with breast cancer. I am 34. What a trailblazer, huh? 🏆

My mind has been playing funny tricks on me ever since the diagnosis, and I don’t think I’ve ever seen someone share the experience before. So in case you’re curious, this is what it’s like:

1  When someone says, “you have cancer” you think, “Okay, he’s saying, this, but it’s not like, the serious kind of cancer. It’s not the kind that can kill you, because I am not the kind of person to have that. It’s like *fringe* cancer. *Technically* it’s cancer, but barely.” Text your partner from the biopsy table (I know, I know, worst ever) because it’s really not that big of a deal. Call your parents and make them talk to the radiologist because you don’t understand even one thing that’s happening at this point.

2  Start to process that you’re having a biopsy because what they saw on the MRI, mammogram, and ultrasound could only be cancer. Immediately tell the radiologist that this is not part of the plan. You have other things to contend with, you have had a crap decade and *cancer* is not going to be the  on top of a  sundae. The bad decade is *over* and this is not happening. Try to process what he means when he says “this is not part of anyone’s plan.”

3  Have a breakdown in the parking lot of the medical center.

4  Convince yourself you must have heard wrong and call to verify. Like, *seriously* convince yourself that no one *actually* said this, and *truly* think you misheard. Call 4 times in two days.

5  Tell your friends and extended family. Feel grateful to have so much support. Feel loved, but sad that you’ve made people immediately cry over *fringe* cancer. Realize you’re probably not processing this diagnosis. Wonder what it will be like when you do. Wonder if you won’t process it until it’s over.

6  Freak out and decide that if you’re going to need major surgery, you really need to get rid of a bunch of stuff in the house so you’ll be comfortable. Donate two pieces of furniture, two giant bags of clothes, every single book you own, and every piece of jewelry you were hanging onto “just because,” because clutter is suddenly NOT okay.

7  Decide that if you’re going to be spending weeks on the couch recovering, you should get a couch that doesn’t give you a back ache. Spend hours googling “hygge” and spend more money on a couch than you’ve ever spent on a single item in your life (which isn’t saying much, because generally speaking you’re frugal as heck). Out of character? Yes.

8  As soon as the couch order is placed, become very depressed. Begin to break down and realize that “fringe” cancer might not actually exist. Think “oh shit, I think I might actually have cancer. Like actual cancer.”

9  Break down crying on your neighbor’s bosom over losing both your breasts. Recognize *as it is happening* that it is wildly inappropriate and you’d literally rather be anywhere else.

10  Get home and put on a happy face for your child, who has no idea what’s going on.

That about sums up the past 2.5 weeks of my life.

Here are the details:

 I have a serious family history of breast cancer on both sides (including my mother, this time last year), and I am considered high risk. I had a strange sensation (like milk being let down) in my left breast in March, and I thought my breast physically felt different, though I couldn’t describe how. I had it checked out, but my doctor didn’t feel anything. Because I am high risk, I started a program for early detection that would start with a breast MRI, and then six months later be followed by a mammogram. This screening process would continue for the rest of my life.

Then four weeks ago, I had the initial breast MRI, which should have been used as a baseline to compare future MRIs. Instead, it came back as “weird” and I was scheduled for a diagnostic mammogram and ultrasound a week later. At that time, they confirmed that what they were seeing was early stage cancer, called DCIS (ductal carcinoma in situ) and I had a biopsy.

 I need to have my entire breast removed to remove the cancer. I will know more about my treatment, including whether I will need chemo or radiation, after my first surgery. I am opting for a double mastectomy with reconstruction. The cancer is on the left side, but I don’t *ever* want to have this happen again. The entire process will take about a year.

 I told my seven year-old daughter this week, and explained to her that this is basically “baby” cancer. So far she does not know the extent of my surgery (or that I will have multiple), and she is not scared.

 My mom came to stay with me immediately after my diagnosis, and she and my boyfriend have hardly left my side. Both of my parents have been incredibly supportive, and my friends and co-workers, both local and distant, have been so totally incredible. The silver lining to this dark cloud is the wonderful people in my life, who did not hesitate for even a moment before offering me their support. The flowers in this photo are courtesy of my many wonderful friends, including @marinliz, @heatherkbrock, @twochicksnest, and my wonderful 🐝🐝🐝. I am so grateful.

I also know that I’m going to be okay. As far as cancer diagnoses go, this one ain’t bad. With my genes, getting breast cancer was probably inevitable, and to catch it as early as I did will make all the difference in the world. It will be a rough year, but I have much to be grateful for. 💗💗💗

I’m not posting this for anyone to feel bad for me. The truth is, we all get dealt crappy hands at various times in our lives.