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.

Peter is 7 months old!

My love bug is growing so, so fast. He weighs 18lbs and is eating solids like it’s his job. He’s beginning to show signs of crawling (or creeping? I can never keep it straight). In any event, he’s moving around really well on his tummy. 

Nora and Peter are still crazy about one another. Honestly, they can’t get enough of each other. Every morning when Nora wakes up I take Peter into her room and she says “Mama, put Peter in my crib. I move over. I gunna make room for him”. After I lay him next to her she sings songs to him and pets him. It’s truly the most adorable thing on the planet. 

Let’s hope this love fest lasts (knock wood, right?!)


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Ok, it’s been a long while!

For those of you still reading my blog, I do apologize. I’m just crazy busy with two littles and trying to balance my own, adult life.

I’ve been posting my updates to Facebook, Insta and Snapchat; and, as a result I’ve been totally neglecting my blog. 

So let me make it up to you. Below are Peter’s monthly growth pics, plus a few other fun ones thrown in for good measure. 

Nora continues to love her brother with all her might. They’re adorable together. Peter is thriving and the happiest little boy you’ve ever met. 

For the first time in a long while I’ve got a lot on my mind and will try my best to post my deep thoughts here. Not that anyone cares, but it’ll ultimately make me feel better to write and get it out. 

I thought I’d lost my blogging voice – but indeed it’s still here. Just lurking beneath the surface. So, I hope to pay more attention to that inner voice in the coming months. 

Stay tuned! Lucky you…..


Peter’s One Month Old & Pumpkin Patch

Hey everybody!

Well, I missed posting Peter’s one month photo yesterday – agh, such is life with two under two! Better late than never, right?

I can’t believe it’s already been one month. Time is just flying by. Peter’s jaundice is all better and he’s growing like a weed. He weighs 8lbs 10ozs and is 20 inches long. He’s got a touch of baby acne, cradle cap and thrush (damn you pesky hormones!), but he doesn’t seem to be bothered by any of it.

Nora is an amazing big sister. She loves to hold Peter and kiss him. She’s got so much love to give!

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How he really feels about this photo shoot!

This morning Paul played hookey from work for a few hours and we took Nora and Peter to the pumpkin patch in Half Moon Bay. It was a fun morning – but we had to play a little man on man defense as we each tended to a child. As soon as we got to the farm, Peter needed to eat. So I took care of that while Paul entertained Nora. Sadly, we weren’t able to get a family picture — but we did the best we could. Something tells me it’ll be a few years before we get a family picture again! haha!

This weekend we’re having a Sip & See for Peter. We’ll have an open house for a few hours so that friends can drop by to meet Peter. Stay tuned for pictures from that as well as Peter’s newborn photo shoot. xoxo

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This one snuck up on me

Yesterday was my 4-year cancerversary. It snuck up on me for sure – but it’s not like I forgot about it. It’s always in the back of my mind. Happily though, Paul totally forgot about it. Which I’m fine with. It’s not a ‘versary I like to dwell on too much.

I spent a cozy, delicious day snuggled at home with Peter. I had plans to run an errand or two – but ended up nesting at home with my new little bug instead. It was heaven. Until the witching hour that is. Around dinnertime, literally, everybody in our house was grousing. Peter was crying for a feed, Nora was melting down after a long day at daycare, Maisey was plead-barking at the back door to be let out for a potty – and Paul and I were divided in separate rooms tending to the tiny humans. It was perfectly imperfect. I felt like crying, but chuckled in my head instead. I suppose these are life’s little moments!

Some updates for you on the cancer front:

Earlier this summer, I was accepted into a clinical trial for TNBC survivors. The trial is by Cynvenio and they believe that they can perform a biopsy on our blood to detect whether we’re having a recurrence up to 8 months before current tests could catch it. The trial is specifically for triple negative folks like myself. I don’t have to do a whole heck of a lot except give my blood 4 times a year. I thought I’d get kicked out of the trial b/c I missed the second draw due to bedrest with Peter. But they were cool about it and let me miss one draw and stay in the study.

One of these days when I have some time I’ll post more details about the trial itself. I’m sure you can google it if you’re really curious. Who knows if it actually can detect what it says it can — but that’s the point of the trial, right? I’m happy to participate and do my small part to help advance science.

I’ll leave you with some scrumptious pics of the kids and a hilarious video of Nora and Peter, enjoy!

Athleta

Some of you may have noticed my mug in Athleta’s October catalogue 🙂

I wasn’t sure if I was going to post anything about it because the catalogue shoot happened in mid-April before Peter and I landed in the hospital. I can’t tell you how many times I thought about the photoshoot while I lay in the hospital bed willing Peter to stay inside. Part of me felt like an ass for doing it and highlighting my post-cancer pregnancy. Stupid girl, you let your guard down, now this terrible thing has happened — that’s what you get…. (oh, the psychology of it all).

I was so superstitious this summer, it’s not even funny. So I decided to keep mum about it.

Thankfully Peter arrived safely (save this whole jaundice issue we’re currently working through) so I suppose there’s nothing to jinx anymore (though with my luck, I’ve learned to never say never).

Here’s what I can say at this very moment in time: There IS bold, beautiful, messy and joyful life in the wake of cancer. Yay!

As always, please think before you pink…….


Here’s a link to the current Chi Blog post about the photoshoot. There may be another post about me at some point in October. I exchanged emails with their social media person while I was in the hospital. I’m a little afraid my comments were incoherent since I was so preoccupied with bed rest and all things pre-term-labor-related. If they happen to post something I’ll be sure to link to it here for you.

 

Joy & Pain

Last week was hands down the craziest week of my life to date – and I’ve encountered my fair share of crazy in this life!

[For those of you who are Facebook friends with me, some of this will be familiar to you, some of it will be new info.]

One week ago we welcomed Peter into our family. His birth was incredible and beautiful and everything this momma could’ve wanted after such a difficult pregnancy. It was a celebration all around because we basically know all the nurses and doctors at CPMC at this point 🙂

The very next day (about 12 hours after I gave birth) we got a call from Nora’s daycare that she fell down and had a bad cut on her head. Paul left Peter and I at the hospital to pick her up and take her to our pediatrician.  He didn’t even see the doctor! As soon as he walked into the office, the nurse took one look at her and told Paul to take her straight to the pediatric ER at the hospital I was at and to wait for a plastic surgeon to stitch her up.

Long story short, they spent the day in the ER, Peter spent the day in the nursery and I went back and forth between post-partum and the ER visiting all my babies. It was exhausting as hell. My body was not happy.

I was so emotional as it was – it hadn’t even been 24 hours since I was pregnant and on bed rest – now I’m having to watch my darling girl get glassy eyed and dazed from ketamine, while my brand new baby lay in the nursery without me. It was more than I could handle.

I had to leave the ER and go back to my room to snuggle Peter.

I went back to the ER when Nora was coming to – and watching that was even worse. She was just starting to get her words back and was writhing around. I cried and left Paul to watch over her until she was back to normal. I couldn’t physically contain her body as she writhed around so Paul took over and comforted my sweet Nora and made her feel safe.

Sidenote: Paul is the best father in the world. I don’t know what we’d do without him. He takes such incredible care of Nora.

So after that traumatizing day, you’d think things would finally settle down for our family. That’s what we thought too!

Wednesday morning the well baby pediatrician discharged Peter but told us he had a slight case of jaundice. He was confident that Peter would feed through the problem since we’re bottle feeding him donor breast milk from the milk bank on demand (the idea is to keep him eating so he pees and poops all the bilirubin out).

We followed up with our regular pediatrician the next day. She too told us the same thing – he’d likely feed through it since we’re giving him as much bottled breast milk as he wants. But he was looking really red (and if you pressed on his skin it would come back yellow) so she wanted us to come back in the next day.

At Friday’s appointment, I told the doctor how I was having trouble keeping Peter awake for full feeds. He kept falling asleep during his first burp break and wasn’t increasing his volume intake of milk. He’d also lost more weight (down to 6.5 from 6.14 at birth). She told us to head to the ER to have labs drawn and take any additional steps, if necessary.

For the second time in one week, but with a different child, we went to CPMC’s pediatric ER. The staff were wonderful and asking after Nora.

The on-call doctor wanted to test Peter’s bilirubin levels and asked if we wanted to draw from the vein or do a heel stick. I opted for the heel stick assuming it was less invasive and painful for Peter. Ummm, not sure about that decision. The heel stick is cruel. I was in so much pain watching them milk his little heel for two vials of blood. All the while he was wailing in my arms. I felt so helpless. Then I realized that they did 4 or 5 heel sticks on him when he was in the well baby nursery (to check his blood sugar b/c I had gestational diabetes and to do his newborn state screening). Ugh, the tears welled up in my eyes.

It felt like an eternity before the results came back. We found out his bilirubin level at 3 1/2 days old was 21.8. The thing about bilirubin levels is they’re assessed based on the number of hours old your child is. So, 21.8 in a 10 day old is very different than 21.8 in, say, a 2 day old. It’s sort of a sliding scale. His number was high enough to classify him as “high risk” so he was immediately admitted to the NICU and started on full blast phototherapy. He had the overhead lights as well as the blanket. They kept him from Friday afternoon until Sunday afternoon. It was very difficult to come home without Peter on Friday. I felt so empty.

His level came down nicely from 21.8 to 14.2. On Saturday afternoon, they removed the overhead lights and just had him on the blanket. His levels still decreased – but not as dramatically. By Sunday morning it was down to 13.7.

Once again we were discharged and told to keep an eye out for listlessness, decreased interest in eating, not stooling or peeing etc. We had another follow-up with our pediatrician today and we’ll go back in again on Wednesday. All is looking good at this point.

I’m trying to be brave and strong but I’m terrified for my baby. I know in my heart he’ll be fine and we got him under the lights at the right time. But of course, I still worry that there may be some long term impact. Our pediatrician said had we waited any longer, he may have need a blood exchange or worse, he may have had brain damage. A super scary statement, but the moral of the story is he got the attention he needed, when he needed it. Very grateful our pediatrician monitored him so aggressively and will continue to do so.

So, that’s an overview of our insane week. Filled with the highest of highs for a parent as well as the heart aching lows. I pray that the rest of the ride will be smooth from here…