Turn, Turn, Turn

Today is Janet’s birthday. I ‘ll celebrate her by carrying on her memory and life’s mission. She wanted more, much more, for folks living and dying of stage 4 metastatic breast cancer.

Just last week Paul and I were on a kinder open house tour – and I saw a lady with a beanie on. Clearly no hair underneath (this wasn’t for fashion or style – this was chemo). I made a point to join her tour group so that I could talk with her and let her know I’m in her tribe. I was ready to flash my freshly revised port scar and all! As I approached her from behind, she turned around and faced me, I was taken aback, it was my friend Julie (was it a badge of honor that I knew the cancer lady on the school tour? Ugh, I dunno, maybe?…probably not, I’ve lost all sense of perspective at this point).

Julie is living with metastatic disease. She’s my age (ish) and has a daughter Nora’s age. Her life is very different from mine, yet exactly the same. She’s a mom. She’s going on kindergarten tours. She’s trying to figure out the lottery system for her child — same as me. BUT, she has to do all this planning wondering how long she’ll be on this earth – will she be here to watch her child go to kinder? 1st? 2nd? 3rd? You get the point. I want to scream, kick and shout for her.

So then, we continue on with the tour. Paul and I trying to picture our kid(s) at the school, marveling at the dance studio and art room – but I couldn’t stop putting myself in Julie’s shoes. The pit in her stomach as she walked the halls wondering how long she’d get to see her child grow and learn.

It’s GD heart wrenching. I hate it. I hated stealing glances at her on the tour knowing exactly what she was thinking. I wanted to scream like both of my toddlers do every.single.day. THIS IS NOT FAIR. ITS NOT FAIR. SHE’S BEING CHEATED. HER FAMILY IS BEING ROBBED.

All I can say is stage 4 needs more. It’s not just a cute hashtag. Please please please do what you can. No matter how little, because it matters. If you’re able, donate HERE.

To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time to be born, a time to die
A time to plant, a time to reap
A time to kill, a time to heal
A time to laugh, a time to weep
To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones, a time to gather stones together
To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time of love, a time of hate
A time of war, a time of peace
A time you may embrace, a time to refrain from embracing
To everything (turn, turn, turn)
There is a season (turn, turn, turn)
And a time to every purpose, under heaven
A time to gain, a time to lose
A time to rend, a time to sew
A time for love, a time for hate
A time for peace, I swear it’s not too late

 

IRL

 

You are exposed. And unconscious. And it must be difficult to trust. I honor you, Dear One.

My job is to help your surgeon take away the cancer. I get a bird’s eye view of the process. The surgery begins and I feel your warm skin through my gloves. I wonder what stories you already have and the ones that are yet to come.

We carefully remove your breast. It never gets easy to see or to do. You must know this. It never feels natural, it never feels cavalier. It feels sacred to me. Every. Single. Time.

Julie posted this amazing article from a nurse in the OR during a mastectomy. It feels appropriate to re-post in celebration of all of us who have undergone this trauma. Breast cancer is not the easy cancer. We are cut up, amputated, re-amputated, disfigured, chemo’d, radiated and on and on and on. Some of us die. Some of us live. Whatever the outcome, the disease is forever seared into us, our bodies and our loved ones.

It’s a really hard road to walk. I’m forever grateful for my community of amazing BAYS folks who hold me up (and who I try my very best to return the favor to). NONE of this is cosmetic. NONE of us elect to do this.

This article is a beautiful tribute to all of us who have had to chop or slice our boobs and/or breast tissue off and deal with the aftermath. I don’t want to speak for all of us, but my chest is forever changed, Not in a good way.

I’ll post more about my surgery and recovery in the coming days. I find it easier to talk about when I have some distance — so bear with me!

For all my new non-cancer friends, NOPE. Saying crap like “oh you’re so lucky, you got a boob job” or “you get a new new rack” is SUPER OFFENSIVE – please just bite your tongue and stick to “I’m holding space for you”  or “sending you love and light” or “I’m so sorry you’re dealing with this, how can I support you?” – those are the most non offensive things you can say – BUT pah-lease don’t say shit about “how lucky I am to get boob job” (sic), for the love of christ. It’s super ignorant. So sad that 7 years in I’m still dealing with these IGNORANT comments. UGH. BLECH. BARF.

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10.11.19

On 10.11.12 I was launched onto a new and different path. Not a good path, not a bad path, just my path. I’m not mad at it.

Happy 7 year Cancerversary to me!

“What’s up y’all, what’s it gonna be? Who’s on the line for your homie Al B.?”

Anyone? Test 1,2 – is this mic on? Who gets my title reference? My east coast peeps? My Bucknell peeps? Link HERE if you don’t get it!

OK – so: “What’s up y’all, what’s it gonna be? Who’s on the line for your homie Al B.?”

Hey Al B., my name is Andy
Please sit back and check this rhyme…
The worldwide recall of my implants
Made me feel crazy in the head
So I talked to Roy – my boy
And we’re gonna swap that shit out
October 21st is the day
2 weeks to recover is what he says
The new implants will be round and smooth
But they aren’t anatomically shaped
So we’ll do a lot of fat grafting
To try and make them look normal
I’ll probably look like a porn star at the end of the day
But at least I’ll have peace of mind
That the new implants (probably) won’t lead to another cancer

Harumpf. I don’t think I’m the next Eminem….

 

10.11.18 – 6 years later.

6 years later. It seems long, but not distant. Does that make sense? The pain memory has faded, but the muscle memory holds it all. Strange, isn’t it?

6 years later and I find myself in another conference room. On this particular morning, I don’t receive a call from Dr. Huo (thank God!), instead, this conference room is where I busily work away at my new job as a People Partner at a cool company, working with, and supporting, really smart and motivated people. I feel really happy on this particular 10.11.

4 weeks ago I started a new chapter and went back to work. The adjustment hasn’t been that bad. Paul’s been a great support and has taken on a lot more kiddo duty so that I can ramp up. I really love working and I think I’m doing a good job keeping it all in perspective and maintaining balance in my life between the kids, the hubs and self care time. That said, I’m only 4 weeks in, so the train has plenty of time to come off the tracks!

In all seriousness though, things are good, really good. Life seems to have reset itself. This will never be something that I forget, that I don’t think about often. In fact, I continue to take cancer booty calls from PAMF on a regular basis. But, it’s sort of become woven into my fabric. My close friend circle is filled with so many BAYS pals. The lines are all blurred and I love that. I love it. It’s who I am now, and I kinda dig the new me.

This is what 6 years later looks like for me – a full head of hair – lots of chaos – never a perfect family photo – and most importantly, crazy fun with Paul, the kiddos and Maisey, Maise…..

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STATS:
6 years
1 amazing hubs
1 amazing Maisey dog (whose namesake is now pretty well known – Maisey Hirono)
2 beautiful, amazing kiddos
1 amazing new job!…..

 

Janet

It’s hard to believe I was just sitting with you on your couch 72 hours ago. Talking about deep and heavy things, as well as perfectly mundane stuff.  You taught me so, so much. In the way that you lived and the way that you died.

Your memory is a blessing. I’m privileged to have known you. May you rest in peace.

In a Hurry
Janet S.
I want to see, touch, do, taste, smell, feel everything. I want to go everywhere, walk the earth, climb the mountains and snowboard down. Try everything at least once.
Lots to do, I’m in a hurry. Not much time left. How long do I have before the cancer makes it impossible? Narrows the world to just my room, my doctor’s office, the hospital? I don’t know, I can’t know.
Time wasted planning for a future I don’t have. Working to save for a family I will never have. No more, I’m here now to experience everything. To dance and sing and laugh around the world and at home.
But, I can’t do it all. No lifetime is enough to experience everything. To watch the sunrise from space.
I will see, touch, do, taste, smell, feel everything I can. In my lifetime, however long or short it may be. And it will be enough.

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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 anything 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.

HuffPo

My second piece is live on HuffPo, check it out!

http://www.huffingtonpost.com/andrea-ghoorah-sieminski/7-things-to-know-while-youre-undergoing-chemotherapy_b_7942272.html

xoxo,

Andrea

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

Got Milk?

Warning: This is a long entry, thank you in advance for sticking it out ’til the end. It’s worth it, I promise!……

According to Wikipedia:

A wet nurse is a woman who breast feeds and cares for another’s child. Wet nurses are employed when the mother is unable or chooses not to nurse the child herself. Wet-nursed children may be known as “milk-siblings”, and in some cultures the families are linked by a special relationship of milk kinship. 

In contemporary affluent Western societies particularly affected by the successful marketing of infant formula, the act of nursing a baby other than one’s own often provokes cultural squeamishness, notably in the United States. When a mother is unable to nurse her own infant, an acceptable mediated substitute is screened, pasteurized, expressed milk (or especially colostrum) donated to milk banks, analogous to blood banks, a sort of bureaucratic wet-nurse. 

I’ve done a lot of research on this topic for Baby S’s sake. Given my druthers, I would have tried to breast feed since I personally believe that there are helpful antibodies in that liquid gold.

I totally understand that it’s a hard thing to do and not every woman who desires to breast feed can successfully do it. Some have trouble getting their milk to come in, while others can’t produce enough milk, still others face the challenge of a baby who won’t latch or nipples that are inverted etc.  I also understand that women who have had work done on their breasts (reduction and/or enlargement) can also face difficulties. There are a million and one reasons why breast feeding may not work out.  I also understand that some women just aren’t that into it and have zero desire to even try.  To each her own, I say! My beliefs aren’t intended to make you feel badly about the choices you’ve made for your child. Quite frankly, it’s none of my business!

But again, for me personally, I would’ve liked to try and do it. Enter the modern day Milk Bank. As Wikipedia referenced above, the Milk Bank is now a viable option for people like me.  Most people tend to think that the milk in banks will go to babies in the NICU or to multiples whose mama can’t produce enough milk to feed all her little ones. But, someone like me can also avail themselves of the bank.  I got my OB-GYN to write me an RX so that we can feed Baby S a 50/50 split of breast milk and formula for the first month of her life.  If all goes well with that, our pediatrician can keep writing RX’s for us, until we’re ready to move her to formula 100%.

The way our local milk bank works is women who are super producers and who pumped and froze their extra milk, donate it.  The bank we will work with will only take milk that is expressed between birth and 6 months. They do this because they blend the milk together to make it a “universal” age. It would be way too expensive to keep every mother’s milk separated out.  The bank goes to the donating mother’s home to collect the milk and give the mother a blood test to be sure she’s healthy, the milk is pasteurized and blended and put into glass bottles. As you can imagine, all these steps come at a price.  Those expenses are passed along to the recipient mom — at a cost of $3.75 an ounce. Yup, you read that correctly, shit is spendy! But worth it to us.

By way of background, the average cost of powder formula is 11 cents an ounce and ready to drink liquid formula is anywhere from 28 to 50 cents an ounce. So, 240 ounces (at $3.75/oz) from our milk bank will cost us $960 (including shipping and handling) and will last us approximately 20 days if we’re doing a 50/50 split with formula.

Our pocketbook is going to take a hit, but fine, let’s do this! This is money well spent in our opinion. Liquid gold, here we come! (For those of you wondering, yes, I called my insurance — and no, sadly, there is zero coverage for women like me who are unable to breast feed due to breast cancer — something we should work on for the future….)

BUT WAIT, it gets even better.  Recently, Paul’s cousin Beth who lives on the east coast (and has two kids, her youngest is 8 months old) texted me and said:

You can tell me this is totally crazy but I really do think I was a wet nurse in a former life – I have donated 550 ounces of BM already and will have even more soon. Not donating it again but I am a totally qualified donor 🙂 The milk is good for up to 5 months – again this could be insane but do you guys want it? I will say it’s not lactose free or dairy free but it surely packs the pounds on Ben 🙂

Ummmmm, HOLY SHIT — YES! We’re not squeamish in the least about this.  I can’t wait for Baby S and her cousin Ben to be milk siblings! Beth is an incredible mom; and, as an added bonus, she’s family. How much better could this get?? She’s sending us slightly over 300 ounces of unadulterated milk! She is our very own wet nurse!

I ended up canceling our milk bank order for now. If we want, we can still get it after we use up Beth’s milk.

Side note, thank goodness Paul and I are both from Buffalo. Anyone from Buffalo will tell you that we all had a supplemental fridge or freezer in our garage or basement growing up. Well, even in our small San Francisco Edwardian home, we do indeed have a supplemental deep freeze in our storage room 🙂 HAHAHHAHAHAHAHAHAHA! Normally, it’s filled with Trader Joe’s goods — but we’ve made room for our cache of breast milk! YAY!

I wrote this blog entry as I waited the UPS delivery from Beth.  She had to buy a special cooler and dry ice to get the milk to us from the east coast.  Happy to say that I just received the shipment. The milk arrived 100% frozen and is now safe ‘n sound in our deep freeze. Below are some pics (I love to document everything).

See, I told you it was worth reading until the end. Paul and I genuinely can’t find the words to tell Beth how grateful we are to her.  What an incredible gift she’s giving our child.  I cry just thinking about it.