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!…..

 

Peter’s 8 months old today!

I can’t believe it’s been 8 months since Peter was born! He’s such a happy guy, always smiling and giggling, especially when Nora is around.

He’s eating solids and crawling around on his stomach and all fours. It’s pretty funny to watch – he sort of looks like an inch worm! It gets the job done though – he’s moving around the room pretty easily and fast. We had to bust out our pack n play so that we can confine him and keep him safe if we need to leave him alone in the room for a second or two. He still can’t sit up on his own – but we’re starting to make some progress on that front.

All in all, he’s just the sweetest love bug.


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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.

Premature Baby 101


To mark my 6 week anniversary at the hospital (gah!), I thought we’d do another “class time with Andrea”. It’s been awhile since I’ve dropped some wisdom on you! hahaha

In all seriousness, I wanted to pass along some information about micro preemie’s. I suspect some of you out there have found yourself thinking “Man, she’s so lucky. She gets to sit around all day and watch TV while nurses wait on her hand and foot. It’s like a vacation!”

Let me tell you, far from it.

To start, completely losing your independence sucks. I feel like I’m annoying everyone when I need more water, a fork, a napkin, or my reading glasses. I feel like a burden asking to have my humidifier refilled twice a day, asking for someone to come into my room to pick up the colored pencil I dropped on the floor, or asking for someone to get my mid morning snack out of the fridge (turns out diabetics need to eat constantly….).

Laying in bed 23.5 hours a day is difficult on the body. I’ve lost muscle tone and mass. I’ve developed gestational diabetes (I’m blaming lack of exercise/movement), and I’m just really sore in general. As the baby grows, the weight of my belly makes laying really difficult.

Trust me, I’d rather be at home, taking care of Nora, Paul and Maisey. I’d rather be having a normal, uneventful pregnancy. I’d rather be reveling in the fact that this is the last time I’ll be pregnant – and stuffing my face with ice cream!

Instead, I lie here for BBS and do the only thing I can to help him. I remain as calm and stress free as possible. I keep weight off my cervix in hopes that the cerclage will continue to hold. I track my daily contractions like a watchdog. I’ve learned all the lingo there is to know in the perinatology world. I keep an open dialogue with my doctors and nurses. I try to push out of my mind the terrifying information about preemies that I’m about to share with you.

Once you understand what micro preemies have to face, you’ll understand why I haven’t written about this until now. I was admitted at 22 weeks and 3 days when BBS wasn’t viable outside the womb. If he had been born in the first week and a half of my stay here, doctors wouldn’t have tried to resuscitate him. Let that sink in for a second….that’s extremely painful to think about.

End of day, I just want the best life possible for BBS. But I can’t control what’s ultimately going to happen. As the person who’s growing this life, I feel guilty that my body isn’t doing a better job. But, I try to focus on the fact that he’s safe right now and we’ve gotten to 28 weeks and 3 days together!

The information below was gathered from https://penut-trial.org/node/1

Prematurity is defined as a birth that occurs before 37 completed weeks of gestation. It is associated with about one-third of all infant deaths in the United States and accounts for approximately 45 percent of children with cerebral palsy, 35 percent of children with vision impairment, and 25 percent of children with cognitive or hearing impairment.

Approximately 50,000 infants per year (961 per week) are born at less than 28 weeks of gestation in the US.

The risk for problems associated with prematurity increase with decreasing gestational age and birth weight. The most immature infants (those born before 28 weeks of gestation) have the highest mortality rate, and if they survive, are at the greatest risk for long-term problems.

The chronic medical and neurodevelopmental problems of children born prematurely often require additional health care and educational services.

 

 

Birth at 23 Weeks of Gestation

What happens at birth If full resuscitation is chosen, at birth the doctors will dry and warm the baby, and then check the heart rate, breathing, oxygen levels, and movement. A breathing tube may be placed to help the baby breathe. Some babies will receive a medicine called surfactant in the delivery room. This helps keep the lungs expanded so the baby can breathe.

It is important to realize that even with the medical team’s best efforts to resuscitate the baby, he/she may not survive to be admitted to the NICU.

Long term medical issues. Some complications of being born early can last throughout life, but usually problems are most severe early on. After going home, most former 23 weekers (85%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 23 weeks gestation, an average of 70 will die (black figures), and 30 will live to go home (blue figures).

 

 

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy (CP), learning disabilities or mental retardation, hearing, and vision problems. Bleeding in the brain while in the NICU increases these risks, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 30 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (23%)
  •  Moderate Disability (26%)
  •  Mild Disability (39%)
  •  No Disability (13%)

 

Definitions:
Severe Disability: Likely to be dependent on caregivers, may be unable to walk or control muscles, very low IQ, deafness, or blindness.

Moderate Disability: Reasonable independence likely, spastic muscles, but can walk with help, low IQ, hearing loss corrected with hearing aid, or impaired vision without blindness.

Mild Disability: Learning disabilities, mild impairments such as need for glasses. Autism and ADHD are more common in premature babies.

Vision: Most will have normal vision, but 25% will need glasses, and about 8% will be blind.

Hearing: Most will hear normally, but (7%) will have severe hearing loss in one or both ears.

Breathing: Many need extra oxygen when they go home. Sometimes, a breathing machine is needed. Most babies get better with time, but breathing problems such as asthma are common.

Birth at 24 Weeks of Gestation

Long term medical issues. After going home, most former 24 weekers (75%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 24 weeks gestation, an average of 37 will die (black figures), and 63 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy (spastic muscles), learning disabilities or mental retardation, hearing and vision problems. Bleeding in the brain while in the NICU increases these risks, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 63 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (21%)
  •  Moderate Disability (33%)
  •  Mild Disability (30%)
  •  No Disability (16%)

 

Birth at 25 Weeks of Gestation

Long term medical issues. After going home, most former 25 weekers (75%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 25 weeks gestation, an average of 25 will die (black figures), and 75 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy and learning disabilities or mental retardation. Bleeding in the brain while in the NICU increases this risk, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 75 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (11%)
  •  Moderate Disability (28%)
  •  Mild Disability (44%)
  •  No Disability (17%)

Birth at 26 Weeks of Gestation

Long term medical issues.

After going home, many infants born at 26 weeks of gestation require special medical care for at least a couple of years (50%). Rehospitalization for medical problems is common in the first two years.

Survival

In the US, of 100 babies born at 26 weeks gestation, an average of 14 will die (black figures), and 86 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy and learning disabilities or mental retardation. Bleeding in the brain while in the NICU increases this risk, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 86 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (10%)
  •  Moderate Disability (34%)
  •  Mild Disability (33%)
  •  No Disability (23%)

Birth at 27 Weeks of Gestation

Long term medical issues.

After going home, many former 27 week preemies (35%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 27 weeks gestation, an average of 12 will die (black figures), and 88 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy, learning disabilities or mental retardation, hearing and vision problems. Bleeding in the brain while in the NICU increases these risks, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 88 survivors are shown by the colored figures

  •  Severe Disability (10%)
  •  Moderate Disability (10%)
  • Mild Disability (35%)
  •  No Disability (45%)

 

Birth at 28 Weeks of Gestation

Long term medical issues

After going home, many former 28 weekers (30%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 28 weeks gestation, an average of 8 will die (black figures), and 92 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy (CP), learning disabilities or mental retardation, vision and hearing problems. Bleeding in the brain while in the NICU increases this risk, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 92 survivors are shown by the colored figures

  •  Severe Disability (10%)
  •  Moderate Disability (10%)
  •  Mild Disability (35%)
  •  No Disability (45%)

 

Definitions:
Severe Disability: Likely to be dependent on caregivers, may be unable to walk or control muscles, very low IQ, deafness, or blindness.

Moderate Disability: Reasonable independence likely, spastic muscles, but can walk with help, low IQ, hearing loss corrected with hearing aid, or impaired vision without blindness.

Mild Disability: Learning disabilities, mild impairments such as need for glasses. Autism and ADHD are more common in premature babies.

Vision: Most will have normal vision, but 25% will need glasses, and 1% to 2% will be blind.

Hearing: Most will hear normally, but about 3% will have severe hearing loss in one or both ears.

Breathing: Some babies will need extra oxygen or a breathing machine when they go home. Most babies get better with time, but breathing problems such as asthma are common.

As you can see, BBS’ odds of surviving, and surviving without too many long term problems was dramatically increased since I was first admitted. Hopefully he won’t have a birthday anytime soon…..

 

Day 24 – 25 Weeks 5 days

Hey everyone,

Just wanted to do a quick update for you. We were supposed to leave on our babymoon tomorrow – oh well – guess we’ll take a raincheck on that one!

I’m on Day 24 of my incarceration, errr, I mean, hospital bed rest stint. In all seriousness, I do, at times, feel like a prisoner, though its arguable that prisoners have more freedoms than I at the moment 🙂 But, when I start to feel that way, I just remind myself that this is all for my son. And, of course, he’s worth it.

Everything with my body, the cerclage and baby are holding stable. I do fetal monitoring and contraction monitoring 3 times a day. So far I’m not really having any contractions to speak of. The few I have are not painful, so are likely just Braxton Hicks – which are normal at this point in a pregnancy.  Baby boy is super active and recently moved from breech to head down (though he can easily move back to breech since it’s still really early). I get my amniotic fluid levels checked twice a week, and so far so good on that front. I get an ultrasound to check the cerclage every two weeks — my next one in July 13th.

My doctors are becoming cautiously optimistic.  While we still talk in terms of days, not weeks. They each (my OB and my high risk surgeon) have said they’re hopeful I get to 28 weeks and beyond.  My surgeon went so far as to say that he’ll be going on vacation in late August for 2 weeks and ‘I’m not to have the baby while he’s gone’. If I behave, he said he’d remove the cerclage on September 15th. That, ladies and gentleman, is TEN WEEKS from today. Holy goddamn hell. Thats a long way away. But my due date is October 15th, so to hold this guy in until September 15th would be awesome!

So that’s the update for you. Here are a few of my upcoming mini-milestones (in case you wondered about the inner workings of my brain):

  • Make it to my in-room massage on 7/7 (that’s today, yay, I made it!)
  • Make it to the RHONJ premiere on 7/10
  • Make it to the Flipping Out premiere on 7/13
  • Book another in-room massage for next week and make it to that
  • Make it until week 27 (7/16) when my OB gets back from vacation
  • Make it to my 41st birthday (7/17) b/c mama’s hoping for a damn good present this year 🙂

So those are the goals for the next little while — you can see I’m trying to keep it light and simple! Stay tuned for a post on tips n’ tricks to surviving a prolonged hospital stay. Figure I might as well pass along some things I’ve learned along the way…

xoxo

 

 

 

 

Kauai 2016

Summer has officially begun in the Sieminski household! Last month we were in Kauai with my cousins for 10 glorious days. While vacationing with a toddler is exhausting as hell, we still had a fantastic time 🙂

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