Life’s Difficult Lesson

5.1.2017

We all die. That’s the one universal truth, I suppose. Nobody approaches this topic better than my friend Janet (see all my links below to her talk, music video and article). I met her through BAYS and boy am I glad I did. She is a spitfire and she is wise. She is a bright light and she is intense emotion. She is alive and she is dying. She is a contradiction. She is…..well, she just is.

Janet’s been metastatic for many years. She’s enjoyed periods of non-treatment and periods of intense treatment on and off for 10 years.  The first time Janet and I hung out one on one a few years ago, we talked about her reality. She’s the first Stage 4 metastatic person I’ve ever been close to. She told me that she’ll be in treatment for the rest of her life until the treatment simply stops working or she decides to stop treating.  Plain and simple. Black and white.

See, that’s what I adore about her. No bullshit. When she paid me a surprise visit early on during my bedrest stay with Peter. She didn’t mince words. A pediatrician herself, she knew the shit we were up against. I told her some of my naive thoughts, and she calmly, yet gently brought me back to earth. Preparing me for the potentially devastating outcomes that might’ve been for Peter. I’m so grateful to have someone like that in my life. A straight shooter who cares and comforts at the same time. Perhaps its the cancer club that makes us this way? I dunno. But it’s a sisterhood beyond nothing I’ve ever experienced in my life.

Now, it’s my time to be there for Janet.  She’s at a crossroads and her treatment is diminishing her quality of life — which until this point — has been exceptional. When I sat with her at her house last week, she shook her head and told me “This isn’t living. How I feel — this sick and weak– this isn’t a life.” I read between the lines, but she went on to be very clear. She’s seriously contemplating stopping any further treatment. Chemo isn’t working. Isn’t going to extend her life measurably and is making her feel like shit. Rendering her useless on the couch all.day.long. For someone who scales mountains on the regular — she is down and out.

In the non-cancer world, we’ve all been conditioned (for some odd reason) to rally and cheer and champion someone who is dying. “keep fighting” “don’t give up” “you got this” “are you sure?” “just a little while longer” “keep going”.

Now that I live in the cancer world, I intrinsically know that when someone tells me they’re done — I get it. It’s not something to decide on a whim. It was extremely heart wrenching for me to just nod my head at my friend, blinking back my own tears, while holding her hand and telling her it’s ok if she wants to stop treatment. Make her *feel* my support for her decision. Don’t put her in position to comfort me. Don’t put her in position to defend her decision. Selfishly, of course, I want her here on earth as long as possible. But realistically, at what cost to her? It’s not worth it. I love my friend and I want what she wants. Only she knows what’s best for her. I’m just here to support and love her.

Oddly, when Janet visited me in the hospital when I was on bedrest with Peter. I remember making a joke that “surely this penance will buy me out of any cancer recurrence or metastasis, right?!” I went on to say that if I were to get cancer again, I wouldn’t have the strength to enter treatment again. Having been knee-deep into bedrest at that point I was physically and emotionally spent.  I was tapped out. Janet didn’t say what most would….. “oh don’t worry, you won’t get cancer again!” She didn’t shy away from it. She simply said “you’ll find the reserves to do it. you just will.”

Knowing that’s how Janet approaches life. I fully respect her decision to be done. I know she found her reserves and she’s tapped them to the max. Damn, has she ever lived. I am truly honored and privileged to know her and hug her and love her. I will continue to do so for as long as I can.

Below are links of Janet’s speech, music video and an article about her. Janet I LOVE you and insist on celebrating your great, big, bold life NOW.

Living in the Shadow of Triple Negative Breast Cancer

Last weekend was my 3-year cancerversary. With each year that passes, my cancer experience moves a little bit further away from me, yet at the same time, it cozies up to me even more.

As time goes on, you’d think I’d feel further removed from it, but I don’t. That’s the cruel thing about cancer, it’s the gift that keeps giving. I live in what feels like a constant fear of recurrence. Some days and weeks are better than others. But some stretches are really bad. Like a python winding its way around my body, tightening it’s grip on me, slowly squeezing the life out of me. To understand what I mean, let me explain a bit about my subtype of cancer.

Triple-negative breast cancer (TNBC) is a subtype of breast cancer that lacks three important hormone receptors that are used as targets for cancer treatment. These receptors are important because they reveal where the cancer is most vulnerable and help determine how to best treat it. Since triple-negative breast cancers lack the presence of all three of these receptors, this subtype of breast cancer is more difficult to treat and more likely to recur. Triple-negative breast cancers have a relapse pattern that is very different from hormone-positive breast cancers: the risk of relapse is much higher for the first 3–5 years but drops sharply and substantially below that of hormone-positive breast cancers after that.

Doctors and researchers have yet to figure out what causes TNBC. So survivors like me undergo major surgeries and intense chemotherapy protocols in the hopes of killing the cancer and keeping it at bay forever.  Unfortunately, because our cancer is not hormone positive, we don’t get the mental safety net that is 5 to 10 years of hormone blockers. We don’t get to take a pill that we know is preventing our bodies from producing the hormone that causes our cancer.

PS – I know that taking tamoxifen (or something like it) is no walk in the park. I realize I sound a bit like a brat since I don’t have to deal with 10 years of hot flashes, mood swings, libido drain, inability to carry a pregnancy and a whole host of other crap. But please understand that having no ability to do anything to ensure my cancer doesn’t come back is a total mind fuck. All we’re told is that our survival rate will increase dramatically if we can make it to the 5-year mark.

I’ve no choice but to set my 5-year timer. Tick tock, tick tock, tick tock. Ugh.

In the months leading up to my cancerversary this year, I wasn’t feeling right. I was having a lot of trouble with my lungs, and a lot of swelling and pain around my ribs, implants and armpits. I put myself back into physical therapy to try and kick start my sluggish lymphatic system. But, the issues persisted. My lungs and my bones ached. And not in a “you have a new baby, all moms are exhausted” kind if way. No, no, they ached in a scary cancer kind of way.

I was winded, exhausted and becoming increasingly terrified I was having a recurrence or worse, mets. When I looked at my daughter, my brain wouldn’t allow me to see her grown up. It was protecting me from the possibility that I might not be here to see her fully grown up. The feelings were becoming crippling. I couldn’t fully enjoy caring for my daughter. I had to do something. Set my mind at ease once and for all.

So I got a PET scan 5 days before my cancerversary. I told very few people I was having the scan done because I was really scared the results wouldn’t be good.  I just had a premonition that my good fortune was running out. You see, I’m one of the lucky ones. I have a perfect, beautiful, healthy 9-month old daughter, who was born after cancer. I was blessed enough to be able to carry her to term and birth her into this world. It was the most incredible thing that’s ever happened to me. My life is back on track, right? I’m a new mom, with a new lease on life, right? Cancer is behind me, right? I survived this, right?

But why do I feel such dread and doom hanging over me?

This is what it’s like to live in the shadow of triple negative breast cancer. As I wait to make it to my arbitrary finish line where I might be able to breathe a bit easier, I wrestle with some serious PTSD.

Thankfully, the results of my scan came back clean. I’m still dancing with NED (No Evidence of Disease). Yay!

I feel like I’ve bought myself a few months without as much worry bubbling directly under the surface of my everyday life. Now, when I workout, I happily push my lungs to the point of burning because I know there are no tumors in them. When my joints and bones ache the next day, I don’t sweat it, because I know I don’t have bone mets.

Only 725 more days to go….. Wish me luck.

Hello, I Have Cancer….

I wrote this two years ago and just came across it in my draft posts. I added a little bit at the end to bring it up to date. Enjoy:

So I was watching the Tig Notaro Netflix documentary and I decided it was high time for me to write my own reflective story. So here goes:

Hello, I’m infertile.  I thought the very worst thing in my life was that I couldn’t get pregnant.  For years my husband and I tried. We tried the old fashioned way. We tried the least invasive way. We tried the middle of the road invasive way We tried the most invasive way, multiple times over. Yet no pregnancy and no baby.  I wept and I wept every single month that we failed to get pregnant. And I say “we” loosely.  When you struggle with infertility, it quickly becomes an “I” game, not a “we” game. I had to do all the shots, I had to take all the hormones I had to check my underwear everys single time I went to the bathroom praying that my period wouldn’t show her nasty face. Sure, my husband was also infertile in a way — but he wasn’t physically going through anything. It was all on my shoulders and I was failing, miserably.

And after three years of infertility treatments, including 10 IUI’s with and without injectables and 4 IVF rounds including a few frozen embryo transfers, we still were without a child.

It was the worst kind of hell a person could be asked to live through.  I was working full-time at a very demanding start-up company.  I was juggling my personal hell with my professional goals.  It was horrible. I was miserable. I thought it was the very worst thing that could ever happen to me in my whole entire life. And then I was diagnosed with cancer.

If I could go back and whisper in my own ear, here’s what I would tell myself.

Andrea, hold tight to Paul even though you’re mad that he doesn’t feel “in the mood” and your ovulation window is closing. Hold tight to him because you can’t have a baby anyway. Hold tight to him and love him purely. You are about to find out that having a baby the old fashioned way isn’t an option for you. So hold on to this connection as long as you can. Nobody really talks about it, but having sex “on demand” is horrid — it can break a couple in half quickly. So hold tight to this loving man who appreciates you and your body, even though it hasn’t yielded a baby.

Andrea, you’re now 8 months into your fertility journey. Keep your head held high. You’re doing the right thing. It sucks to have to give yourself shots and that you cringe every time a friend posts her ultrasound to Facebook announcing her pregancy. Remember, she doesn’t know what you’re struggling with infertility because you’re intent on keeping it a secret from the world.

Andrea, why are you still keeping this a secret? It’s now been 3 years since you started this journey. your medical expenses have topped out over $100,000 and you’ve given yourself over 1,000 shots to the belly. Don’t you think it’s time to share this complete fucking hell with somebody?

Andrea, don’t you feel so much better now that you’ve told your family what you’ve been struggling with. Honestly, this has been the WORST thing imaginable. But it’s been really nice to have their support. You feel a new sense of energy and sticktuitivness, Ready to conquer the next hurdle.

Then you feel the lump. You talk to Paul about it but try to brush it off. You talk to your fertility nurse about it and try to brush it off.  Then the lump persists. You can’t ignore it. You go to the doctor and she fells it and orders some follow-up tests. Still, in your mind, you brush it off. What.could.be.worse.than.3.years.of.infertility?

Breast cancer.  It was laughable to me when it happened. Fucking hilarious. Seriously, for real?

After all that’d I’d been through, I got cancer. Wow.just.wow.

Andrea, just hold on a little while longer. 2 more years. You can do it. You can handle having your breasts amputated. You can handle surgical recovery. You can handle chemotherapy. You can handle your body being reduced to a lump of shit with no muscle definition or endurance. You can handle testing your marriage, yet again. You can handle it all.

Andrea, you can handle it all — but you will have your moments. You will have those times when you dont want to be the superhero. When you don’t want to smile through the tears. When you dont feel like asking another person how THEY feel. When you want to be selfish and cry. and weep. and weep. and weep. and wallow.

Andrea, your beloved dog will die unexpectedly just as you are feeling like yourself after chemo is finally done. This will knock you an on your ass. You will question everything that you thought you understood in this world. You will become angry. More angry than when you found out you had cancer, You will be sad. So sad. Sadder than when you couldn’t have a baby month after month after month.

You truly thought you’d been dealt the worst of the worst. First the infertilty, then the cancer, then your fucking dog died. What next? How much lower can you go?

Andrea, you will look up through your tear-drenched eyes and see the love that your husband has for you. You will realize he is all you need in this world. Baby, no baby. Dog, No dog, Cancer, no cancer. He is your salvation. Stop taking him for granted. He is incredible. Look no further. He’s been at your side the whole time. Quietly and not so quietly rooting for you. Whether you know it or not. He’s been your biggest fan.

Andrea, you’ll get the type of cancer that’s incerdibly aggressive — BUT it’s the kind with no aftercare for 10 years. You can hop yourself up full of hormoes and still carry a pregnancy.

Andrea, you will become pregnant and enjoy every single second of it, including the birth.

Andrea, all of your wishes and dreams WILL come true and you will be happier than you could’ve ever imganined. You will want to bottle the emotions because they’re like crack. You could make a fortune selling this feeling to other people.

You are one lucky son of a gun. What a long strange trip it’s been.

Post script – you get pregnant for a second time and almost lose the baby at 22 weeks. Life seems likes it’s at another all time low.

Andrea, hang in there. After an emergency surgery and nearly 8 weeks of hospital bedrest, you’ll get to go home and serve another 7 weeks of bedrest. But at the end of the day, you’ll get a second baby who is perfect.

In the end, you’ll end up with a daughter and a son. They are perfect in every way.

Andrea, your marriage is still intact and strong. Hopefully the shit show the past 7 years will become a distant memory very soon…..

xoxo.
Me

#TBT – Full Circle

Throw back Thursday — I wrote this piece when we were on vacation last month:
Here I am, once again, blogging by the pool on the magical island of Kauai.  My absolute favorite place on this earth.  We came here on our “cancermoon” in 2012 to center ourselves before my surgery and chemo.  The island worked its magic and we got back to San Francisco ready to face my cancer head on.
We were also here on Kauai that dreaded day when Dr. Smith called to tell us that IVF didn’t work.  Earlier today we walked by the store and bench we sat on in Hanalei when the sad news was delivered to us. We got a little emo remembering that day – then looked down at Nora in her stroller and felt like we won the lottery!
This trip, we’ve come full circle.  It’s been 2 years since I finished treatment, I have a full head of hair again and my beautiful, perfect daughter is here with us (only piece missing is crazy Maisey).
It feels so nice to be reclaiming those sad times and to *finally* rewrite our story.
But I can’t help but wonder and feel scared when Paul says things like “we have our whole lives to watch Nora grow and take her on adventures”.  Last night at dinner he said something along those lines again (a perfectly natural statement for any new parent to marvel about) and I quietly whispered “what if I don’t have my whole life to watch my baby girl grow and thrive?”  And told him that I feel scared and sad when he makes grand, long-term statements like that. I could see Paul processing my statement and; for the first time in a long time, he just sat quietly and looked at me with love. Normally he’s so quick to say “You’re fine now. And you’re going to be fine” but this time, he didn’t give me a canned answer. He just accepted my feelings and didn’t try to fix the situation or dismiss my fears. His eyes were sad, I could tell part of him wanted to be the cheerleader and dismiss my negative nelly thoughts — but I’m so glad he didn’t.  It was only a 2 minute exchange, but I felt closer to him than ever.  The reality is that I might get cancer again. or I might not.  That’s it. There’s nothing more to it. It may or may not happen. But having already been there, I really don’t want to go back.
I also think that all new parents feel a sense of mortality when they bring a baby into the word.  I think it’s natural to want to be there for your child no matter what and to wonder what would happen to your child if you weren’t there.  It’s scary to think about whether you’ve had a history of cancer or not.
I look forward to every milestone with my precious, gorgeous, smart Nora. But I don’t allow myself the luxury of looking too far into the future. I just enjoy every single moment of every single day with her and my wonderful husband. Life is damn good right this very second and I am so thrilled to be living it!
   

Nora’s betrothed

Hung out with Bish, Jamie, Mish, Rion and River today. Safe to say that River and Nora are going to be boyfriend and girlfriend…. 

  

Dead Head

Went deep with the Grateful Dead at Nora’s 1pm feed.

It can’t always be Joshua Bell up in our house. Gotta teach this girl ALL the classics.

It reminded me of running around Eagle Heights with Nicole and Sarah. I regaled Nora with stories of mommy’s childhood hijinx!

Jerry’s voice lulled her into an almost comatosed state — she just pulled and pulled on her bottle until she was milk drunk. I was a wee bit concerned the feed might end in projectile vomiting. Ya know — much like a Dead concert — it can go either way! Thankfully she was super mellow and just jammed to the music on her play mat.

She doesn’t come with an instruction booklet, so I just do what feels right. Today, this felt right and, miraculously, it worked. She’s having a good day!

#parenthood

   

 

Tiny Moments

Today we listened to Joshua Bell’s ‘Romance of the Violin’ while you ate.

We both wept.

Tears streamed down my face because you’re finally in my life. I used to listen to JB during cancer and dream of you. Now you’re in my arms and I’m overcome with love. His music takes me back to a sad time. I’m so happy you’re here to supplant those memories.

I’m so emo over you!

I’d like to think you cried because you thought the music was beautiful and haunting. In fact, you pulled at your bottle in time with the music, dozing off during particularily calm parts and coming back to life for a good sucking sesh during the energetic bits.

But in reality, you probably cried due to gas and reflux!

 

EditEdit