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 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.

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.

 

Breast v. Bottle

Guys! I can’t physically breastfeed so PLEASE, for the love of all things sacred, stop asking me about it!

Ever since I found out I’m pregnant — I joined a new club — the “mom-to-be” club. I’ve waited years to gain entrée into this one and am elated to finally be here! As I suspected, people crawl out of the woodwork to offer support, guidance and helpful tips. It’s incredible!

Most notably, however, is the ease with which people talk at you about breastfeeding. The conversation always starts from the assumption that you’ll be breastfeeding.  For the oodles of women out there who choose not to breastfeed for their own personal reasons, this is a terribly invasive and rude conversation.

For me, it’s just a kick in the gut.

Obviously perfect strangers that I meet now have no idea I had cancer.  All they know is that I have weird, short hair (what can I say? I’m in that awkward grow out stage right now!)

20140902-124635-45995478.jpg and I’m having a baby. Great! inevitably, the requisite baby small-talk commences: “OMG, congrats! Your bump is so cute! When are you due? Is it a boy or girl? How are you feeling?” Then comes the breastfeeding convo: “Are you going to breastfeed? It’s a total bitch – hands down, it’s the hardest thing about being a mom. Natural Resources, which is in your neighborhood, offers great classes on breastfeeding — they’re worth the money.”

Since they’re strangers, I politely explain to them that I can’t breastfeed because I had a bi-lateral mastectomy.  I give my 2 minute cancer bio and that usually quiets the conversation. Only the most special people like to return to the topic 5 minutes later. It’s usually in the form of “Well, since you’re not breastfeeding, your boobs are going to KILL after the milk comes in and you have to let them dry up.”  Ummmm, no they won’t. I’m not sure how many ways I can tell you this — but while my breasts are anatomically stunning (!) and easy on the eyes, they’re 100% silicone.

It’s shocking to me how many people who are fully aware that I had breast cancer and a bi-lateral mastectomy STILL mention nursing to me! OH EM GEE, for real? This includes family members and fellow BAYS (my breast cancer support group) friends.  As for my BAYS ladies, there are many paths to treatment for cancer. Some of my BAYS friends had lumpectomies, or single mastectomies and the possibility of breastfeeding still exists for them. Some breastfed their children before being diagnosed, so they don’t stop to think about having a baby post DX. But still, I expect more from this group of people.

Now that I’m showing, these conversations happen pretty frequently. I’ve heard a lot of silly things come out of people’s mouths. But this next one is by far my favorite: “There’s so much pressure to breastfeed, it’s like you’re a monster if you don’t want to do it — you’re so lucky, at least you don’t have to choose whether or not to do it — the decision’s been made for you — AND nobody can give you grief about it because you don’t have boobs” WTF? That one is up there with my favorite breast cancer insult “Well, at least you got the easy cancer.” Not comforting people, not comforting.

Here are my conclusions:

1. People are so damned excited about a brand new life entering the world, they get amnesia about any and all sickness you had in the past.  Essentially, babies are blinding! (This helps me explain away close friends and even family members who talk to me about breastfeeding.)

and

2. People don’t really understand what a bi-lateral mastectomy entails. Little refresher for you – all of your breast tissue is removed in surgery. You are left with skin, pectoral muscle, anatomically shaped implants and rib cage. In that order. I assure you, there’s no breast tissue. No milk ducts. Nope, no possibility of milk comin’ outta there.

In all, it just sort of sucks to be reminded so frequently that I had breast cancer because it makes me think about the limitations I’ll face after giving birth. It makes me sad that I don’t have a choice in whether or not I nurse our baby. I’m also really sad that my chest is still pretty numb, the skin on my chest is cool to the touch (silicone implants aren’t a great heat conductor) and my implants are pretty hard. I wish I could give our daughter a nice warm, squishy landing pad to snuggle up to (and that I’d be able to physically feel her laying on my chest). But I can’t, and that’s sad to me.

If there’s one lesson I want you to take away with you from this post, it’s this: the breast v bottle conversation is as taboo as asking someone who they’re going to vote for. It’s really not your business, so please don’t go there.

 

 

 

 

The Cancer Booty Call

Uh huh. You read that right. The Cancer Booty Call. It really exists.

When I was first diagnosed, so many friends and family rallied around me, did their own research and scoured their social networks.  Many of you sent me private notes offering to introduce me to your mother, aunt, co-worker, or a friend similarly situated to me.  I read and re-read all of your offers and had to decide for myself if I wanted to reach out to a total stranger to talk about what was about to happen to me.

In the end, I took two of you up on your offers (thank you Bess and Katie). I ultimately decided that the people you were going to introduce me to were not really “strangers”, rather, they were just like me — and they’d already weathered the storm — so why not take their advice? They must’ve done something right, right?!!!

I placed those outgoing calls and am ever grateful I did.  Being able to talk to somebody who’d “been there, done that” helped give me perspective. Helped me to understand what was about to  happen. Helped me mentally prepare. Helped me realize that I will live and life will go on. They were living proof of that.

At this point, I’ve been on the receiving end of many a cancer booty call from you and/or your friends, moms, aunts, sisters, coworkers and college friends.  It saddens me to think how many of these calls I’ve had with you and your loved ones — cancer is just so stupid… and mean… and everywhere.  But, nothing makes me feel better, as a person and as a survivor, than to help your loved ones as they begin their own cancer battle.

It makes me happy to think that I am now the person that weathered the storm — someone out there weighs the pros and cons of talking to me, a quasi-stranger, and decides to go for it. I know it’s not an easy decision, or one that’s arrived at without much consideration. Just know that those of us on the receiving end of this particular booty call are flattered and happy to help in any way we can.

PS. My check-up with Garrett went well. My white blood cell count was elevated so I had to behave myself on our cross country flight to Andrew and Katherine’s wedding (and at the wedding itself). I don’t have my tumor marker results yet, so nothing to report on that front. Other than that, we talked a lot about the fact that my left implant (cancer and sentinel node removal side) pocket is stretching and my implant is sort of floating out toward my arm pit — leaving rippling and ribs exposed around my fake cleavage. I’ll have to talk to my plastic surgeon and physical therapist in greater detail about this as it’s not G’s forte. In the meantime, I’ve started wearing sports bras to try and keep the damn thing from drifting any further out of the pocket.