Sweet Baby, Sour Cancer

My journey through cancer and pregnancy, twice.

When I started this post I was sitting in front of my laptop and for once was having a hard time writing. Me? Speechless? Never happens. Never say never right?!?!! I don’t know… I guess I am just not sure what I want to say or how to say what I want, or if you even care anymore about what I would write about.

I feel like by now, you may be sick of my cancer posts showing up on social media and frankly, I too get tired of writing about it. Don’t I have anything better to write about? Well, no, not really because if I didn’t have cancer my life would be pretty boring. And I am ok with boring; boring is fine, but I certainly wouldn’t have anything interesting or funny to inspire and encourage others with, if I didn’t have cancer.

So now it’s 3:00am and I am wide awake. Guess it’s time to blog, as I have said before, I do my best writing when I can’t sleep or when my life goes from everyday boring to cancer landmine.

So what’s keeping me awake? Definitely Nate’s snoring. Coras feet are kicking me in the small of my back. Pepper is sleeping on my feet and Calvin sounds like a siren when he sleeps. Although those things were keeping me awake, they really are just excuses. Because, what’s keeping my mind going, is the impending surgery I am facing tomorrow.

I don’t want to do it. I have never been more unprepared, or in such denial over a surgery before. I don’t want to face it. I haven’t even lined anybody up to watch the kids yet. Nothing’s packed. Probably should buy some food for the house, because I won’t be going food shopping or lifting any groceries for a while. Catch up on laundry? Nope, haven’t done any of it.

So what’s the big deal Jodi… come on!? This is your 13th surgery, you should be a pro by now. You got this. Ya, ya, ya…Thanks…I do. I’m not worried about the surgery itself, the pain or even the recovery. Whatever, that stuff is easy. By now, the post surgical pain doesn’t bother me too much anymore. What bothers me is this: we bout to get all up close and personal here…

This surgery will put me into menopause. An irreversible state. After Cora was born I was put on medication that put me in a chemical induced menopausal state. It was- “no bueno”! You can go back and read my blog post from 2016 it’s called The Cancer Hunger Games. To sum it up, I was a really sweaty, hot mess with a sad, dry vagina. Everything was bad. EVERYTHING! And at 37 years old, a new parent, no one wanted to feel that way. Once I stopped those meds it was like I came out of this medical fog. Like I was under some spell and then that spell was broken and I returned to my normal state of mind.

I’m a huge Lord Of the Rings fan. Remember in The Two Towers, when King Theoden was under a spell and Gandalf the Gray comes in? He pulls his cloak off to reveal that he is actually the more powerful Gandalf the White, and lifts the horrible spell. The King’s eyes go soft again, his hair isn’t wiry and it comes back in all nice and thick, his skin goes from old, dry and cracked to soft and smooth. He is a new man.

People be forewarned. Some may be hearing this for the first time… I made a mental note that I would rather die than ever agree to take those meds again. I know this is strong language, but it’s how I truly felt coming out of my Lupron spell. My quality of life was so… altered, so poor, that I swore to myself that I just wouldn’t do it again.

Well, fast forward to Calvin and (of course never thinking I would get cancer again) here I am faced with the same meds and the same spell. Dr. Mayer, a.k.a. one of the smartest ladies I know, doesn’t like dust to settle and immediately brought up taking the meds again, and by ‘the meds’ I mean– the Lupron.

My cancer did not respond to the 16 rounds of chemo I had while I was pregnant. Like, at all (lobular breast cancer does not respond to chemo). My only defense is to starve this hormone fed cancer. So… what choice do I have?

I prayed for two miracle babies and got two miracle babies. I believe that God didn’t give me these babies just to take me away from them. So I feel I need to do my part. Dr. Mayer and I agreed that we have to at least try taking the meds again, and see what kind of response my body will have. So I did it, I was willing to try on the menopause pants and see…

I have been doing the Lupron shots for about 6 months now and guess what…. they aren’t fucking working!!!! I have previously asked for prayer on FB for my labs- well this is what I was talking about. My pesky ovaries aren’t shutting down (even on Lupron!), therefore I can’t start some of my other cancer meds (which come with a laundry list of shit- awful side effects) until my hormone levels are down to zero. So here we are, with me awake, when I should be sleeping, dreading my surgery and dreading what comes next.

“Be positive Jodi, it might not be so bad… Don’t live on ‘what if island’ Jodi… Don’t count your chickens before they are hatched…Maybe this time around will be different… maybe… and it could be different…”

But, let me ask my other sisters in pink…? Nope, they ALL say the same thing… it sucks. Night sweats, husbands complaining their wife feels like a salamander who has been baking in the sun instead of a warm soft body to snuggle. Loss of hair, weight gain, Insomnia.. No doubt my blogging will pick up once the insomnia sets in. Which leads to a tired and irritable next day and yes, even I could* get bitchy. And listen peeps, I understand that every woman goes through menopause, however it usually takes years, like 10 years! I am about to embark on a bullet train to hormone-free-land in less than 24 hours. Side note… I am still recovering from just having a baby.

A cancer sister in pink posted some excerpts from a book called “Undying”. If anyone wants to send me a copy feel free. I will be back in the poor house after this surgery and the medical bills start piling up again. Anyways, the excerpt goes like this:

“Someone once said that choosing cancer treatment is like choosing to jump off a building when there is someone holding a gun to your head. You jump out of fear of death, or at least a fear of the painful and ugly version of death that is cancer, or you jump from a desire to live even if that life will be for the rest of its duration a painful one”.

The cancer gun is to my head, and I’ve been offing body parts one by one, while deciding if I should just throw my entire self (metaphorical or whatever) off the roof top, how many body parts is it gonna take!? I pray that when I land, I am done with this threat (cancer) for good. I’m hoping I will wake-up and there will be enough of me still intact to continue on with life. I don’t like the feeling that parts of me are missing or damaged. And even if I do all these surgeries, all this treatment, it doesn’t even secure a guarantee…

This seems like a cheap description of what really goes on when we cancer people have to take these meds to ‘help increase survival’. I am also trying to keep the bitch-list short, I know the last paragraph was dark. It’s scary to think that after surgery tomorrow (after I jump, or chuck off body parts) none of it is reversible. That’s horrifying, because I don’t know, even now, hours before surgery… but seriously, Fuck you cancer.

On my 21st birthday, my oldest brother took me, his wife and my parents to Foxwoods Casino to celebrate. He handed me a stack full of cash or at least that’s how I remember it, but I was 21 and poor so any money then seemed like a lot… but anyways, he handed me some money and said, “Have fun tonight, you’re never going to be this lucky again”. I made my way around the casino trying different games and ended up finding my fortune playing Let It Ride. It is a form of 5 stud poker where you wager an intial bet based your 3 cards you can see and 2 house cards that you don’t see right away.  The distinguishing feature of the game is you are given two opportunities to retract 1/3 of your initial bet. The 1st based on your hand and then the 2nd after the first house card is flipped OR you can let your full bet ride for the big daddy payout at the end or complete lose it all by Letting It Ride. I did have beginners luck that night and I went home with full pockets. 

It has been a long time since my last super coherent blog post, but here I am.  I am back friends, and I realize, we have a lot to talk about.  I’ll jump right in rather than a long recap: Calvin is doing fantastic and Cora is loving being a big sister. Me?  Well, today… today, I look good, today I feel good.  I am not immediately dying. I am living life and still have lots of life to live. So, for now, my intial cards look good, I am going to Let It Ride. 

Sooooo, I have been taking a lot of ‘flack’ from some people because they keep saying they don’t understand what is going on with my cancer treatment, where I am “at”. Some people are asking if I am all done or if I have beat this beast yet. I suppose I didn’t realize how big of a deal this would seem to others in my life, and I am learning a lot as I grapple with some big questions. Everyone seems to want to know how far the cancer has spread in my body and if it has, what am I going to do about it.

Well, this is information that falls into a grey category. It’s not that I do not want to know, it’s just for now, knowing if the cancer has spread further or where … well, this information doesn’t change anything. I could have a PET scan or bone scan but after talking with my team, we (Nate, myself and my doctor) decided that having these tests wouldn’t change anything except knowing that my disease has gone from potentially curable to not curable. We know the previous chemo didn’t work via the pathology results from surgery. The cancer that I have now does not respond to traditional chemo. My 35 rounds of daily radiation which I am now DONE with, definitely served it’s purpose. All you have to do is take a look at my discolored and burned skin for proof of that. So now we attack the cancer by starving it to death and providing an uninhabitable place for it to thrive in. I will continue to be on different chemotherapy and also what is called endocrine-therapy indefinitely (both IV and pill form) and other meds that make my bones and cells inhabitable for cancer to live in. Also, my recent labs results came back not favorably so now I am deciding between an imminent hysterectomy or oophorectomy (as my cancer is hormone receptive and the medication we’ve been trying to turn off my hormones with, isn’t working).

My team of oncologists are onboard with this plan and with the decision to not have any scans. My treatment plan is currently what they would do for any advanced stage patient, my doc says the treatment won’t change, so what good would taking  PET scan do at this point?  If I’m already getting stage IV treatment, what difference would a PET scan make? My doctor is pretty friggin smart. I trust her and I assure you I may be her only patient who has had cancer twice while pregnant… but I am not her first cancer patient. My hand is looking good, no need to retract my wager and waiting for the house to flip it’s first card. 

That age old question, if you could know when you were going to die, would you? Would you want to know that you could be approaching those pearly gates sooner than expected? My answer is no; for now. What would your answer be? I’m serious. I’m curious to know, comment below. I think this is a situation where you think you would act one way until you were actually put into it and you might surprise yourself at how it actually goes down. I’m realizing that there are quite a lot of opinions out there, and I’m sure it’s a hard answer to make public but it’s honestly where I’m at right now. To my sisters in pink or to my other cancer peeps reading this blog I know you deal with this question as well as other types of big life altering questions, daily!!! And for the record, putting myself out there honestly does not mean I will get 100% approval from everyone on my choices and the path that I am taking, but this is my poker hand, and I get to choose how I play my cards.

I started this journey years ago in my first blog post. You all are along for this ride with me and I want to be open every step of the way.  Thank you for being along for this ride with me. If my symptoms change, then I feel like we will address that when and if it happens or maybe once things settle down and I can handle more news I will go for those scans.  Right now, like I said, I am living life and still have lots of life to live, my cards look good… I am Letting It Ride.

Mountain lion:

What is it like to go through cancer treatment? It’s something like this:

One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOSH THERE’S A MOUNTAIN LION IN YOUR FRIDGE.


So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my husband – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “DAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face and rips him open with his claws. Now your husband (or whatever) is rolling around on the ground clutching his nose and wounds and he’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also kicks your husbands ass too! And your husband is now staggering around with a black eyes and bloody nose, bleeding everywhere and saying “can I get some help, I’ve been punched in the face and all scratched up by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “F this mountain, I never wanted to climb it in the first place.”

This story was not written by me but another fellow cancer patient. They hit the nail right on the head and I couldn’t have said it better myself or made a better comparison. And to think that I’ve climbed that mountain twice! And both times I was pregnant!!! Not a little pregnant but very, very pregnant… TWICE!!! I’m not saying this to toot my own horn. I guess I am talking to myself right now. To drill a point home to my dense brain. For me to really remember and recognize all I have been through the last 4 years. Because I am probably the biggest offender to myself. My mentality has been to not stop, to forge on like nothing is wrong, to think to myself, “I’m not tired”, when in reality, I am a total wreck, exhausted but too delirious to even recognize it. Don’t tell anyone, but I think I have learned to sleep with my eyes open. Keep going, keep going, keep going. I mean really, when there is a mountain lion chasing you, wouldn’t you just keep going? At least until you may think it’s safe to stop and catch your breath for a moment or you’ll just collapse from total exhaustion. Who has time to think about better choices in a situation like this? The raptor brain kicks in and for me it’s nothing but a drive of pure adrenaline and a positive thinking, “nothing can get me down” attitude and to keep the “F” running forward. I know I should extend myself a little more grace sometimes. Give myself more time to rest, heal, recover. And yes, I do nap, I do rest, I do take time for myself… but I certainly put up a good fight that I WILL NOT LET THIS DISEASE WIN! I will not be eaten by a mountain lion. 

Sure, I will come out of this battle scarred and missing some body parts. And my poor husband, he has been beaten and bruised from this, acquiring his own battle wounds from this fight. Not to mention my entire family and extended family has been banged up as well. But we all keep going, running up that mountain, fighting off any predator (not just the bear and mountain lion) that we encounter mountain side. 

And that my friends is a glimpse of what fighting cancer is like. 

October is breast cancer awareness month. Do me a favor and get those boobies checked. In fact take this time to check out any part of your body that could be suspicious for cancer. Early detection is key. Do this for yourselves and your families so that you don’t wake up one morning and find an immortal mountain lion in your fridge. 

The last 9 weeks have been an adjustment. Time is tight so finding a quick minute to blog while feeding Calvin, playing with Cora, or getting her to school/ other activities (or trying to get some laundry done) has been a challenge. So much has happened I couldn’t possibly fit it all into one blog post, but it feels like its time for an update.

Well… my hair is a mess, and I barely have time to put on mascara. I smell of sour milk and somehow find myself perpetually covered in baby puke. I may have bags under my eyes but I’m smiling just typing these words out! I wouldn’t change it for the world. Being a mom has been an amazing experience for me and I am soooo thankful to have two beautiful children.  I love all of it. I love the puke, the 2am feedings, Coras adorably sassy attitude.   I have my ‘moments’ when I’m totally exhausted, but for the most part, I’m enjoying ALL of these moments and taking nothing for granted. I guess that’s one of the perks of having cancer (and not one but two ‘chemo babies’). 

Most importantly, Calvin is doing great! He has doubled his weight and is truly thriving. Hitting his weekly milestones, he appears to not be 5 weeks ‘behind’ at all. He is tough and strong.; that’s how we make um’ in my family! Both Cora and Calvin have overcome so much in their short little lives already.  I’m one proud momma! 

For me… well, treatment continues. Last week I started radiation, which is a whole new experience. I go everyday, Monday through Friday and will have a total of 35 treatments (yet one more thing to pack into cramped days… as if they weren’t busy enough).  I continue to see my friends at Dana-Farber in Boston for chemo, injections, and close monitoring.  I’m taking chemo pills and some other medications. Some of the pills I was on before, some are completely new. Some do the same as previous pills I’ve been taking, but are stronger and others are completely new to me. The prescription arena is where it’s gets all hairy.  Last time, I didn’t do so well on some of these medications.  Beyond the baby puke, I’m in side effect city, but I’ll save those juicy details for an entire different blog post.

For now, Nate and I are taking things one day at a time. We are both pretty tired at this point but somehow make it through another day. We were recently lucky enough to be treated by my family to a quick trip to see the mouse and celebrate my nieces 21st birthday, which was awesome! It was nice to get away from cancer town and side effect city and feel a bit normal for a few days.  But we’re back in town and things continue on, trucking along.

I have been jealous of everyone’s summer vacation social media posts.  While I have been enjoying seeing everyone’s pics, (and vicariously living through them) I have been a little envious that my only vacation has been to Boston. A private bed on the 10th floor at Dana Farber for 13 weeks and then a week straight at the Brigham both paid courtesy of Harvard Pilgrim. Man, I would LOVE to get away and spend some time as a family and forget about all this cancer/medical stuff. There was no time with all the MD appointments each week… chemo… being pregnant… now newborn…you all know. 

Miraculously, I don’t have any appointments or chemo or anything scheduled until the first week of Sept!!! Next week will be the first week (since last March) I won’t have any appointments! A whole week without seeing a doctor. That’s a great and very eerie feeling all at once. Ya know, we have put over 1,000 miles on Nate’s car since March driving to and from medical appointments alone! No joke- totally the truth. Now the car and my little body needs time to heal, rest and recover from the surgeries before we start things (treatments etc) up again. We have a much welcomed break. 

When I realized we would have some ‘time off’ I got thinking while I was up feeding Calvin in the middle of the night. I started looking for some last minute deals on VRBO, hoping I could score something decent to rent for a week. 4 Seasons quality and taste for the price of a motel 6 room. So I emailed a few people looking for availability. Long story short, I got to talking with this really lovely property owner. He is a Christian and said he was praying when my email rental request came in. We shared some information and I told him somewhat vaguely that I was in the middle of treatment for breast cancer and looking for a place to go and relax. A place to go to forget about it all.

I don’t know what he was praying about when I emailed, but … can you believe he offered us their place for an entire week (to unwind, to connect and enjoy each other as a family) at NO charge!?!?! FREE!!!! FOR A WEEK!!!! When can you get anything free, never mind a rental house, on the ocean, from a complete stranger for an entire week!?!?!? I was not expecting this! I was not expecting anything at all except possibly a last minute booking for maybe a small discounted rate that I knew we probably couldn’t afford anyways. I was on a wing and a prayer and got both.

Tears of joy have been streaming down my face since I found out. Thinking about how big this guy’s heart is, really floors me!  But good people DO still exist and I have been blessed by him. Flipping amazing…

I have and do really try to stay positive and keep my mental health in check through all of this. It’s easy to stay all ramped up and ready when your in the middle of the fight. But when the dusts settles a bit and there is a lull in treatment (like now) there is time to breathe. And when you stop to breathe, there is time to reflect. (Then the reality of what has happened starts to sink in a little… Woah!) I have started to realize the amount of energy and stamina that has been put into the last 6 months. Heck, the last 5 years!!! I realize I. AM.TIRED. This cancer poker face of mine has been going strong for 6 months straight. And damn, it’s hard to maintain that! My breath leaves me for a second when I think a little more about what has happened. I pause next and give a little head shake… shake off the trauma, the doubt. Shake off all the losses I have accrued, and put them neatly on a shelf in in my brain. It’s not time to deal with this yet. Not going there. I quickly pull it together. I got this, we got this. Forward thinking and ready to move forward. Back to Maine… Onto a quick little vacation and then the last legs of treatment. (Next blog will give those details)

Back to just thinking about a week away from it all in rural coastal Maine is going to be so prefect. Our little family of 4. It’s so easy to go down the cancer hole. Get wrapped up in all bullshit that goes along with it. And while yes, sometimes I feel like I am 1 second away from losing it completely or totally throwing it in and going off the reservation, I think about my family. I think about my faith and what God has brought me through. I think about the love I have experienced and the blessings. I think about our trip to Maine…

How we will have our morning coffee on the deck. We will have big comfy sweatshirts and warm slippers on till the chill of the night air leaves and the sun warms everything up. Sip after sip, the caffeine starts to work and our eyes open, we watch the fisherman in their boats leave the harbor to go collect the lobstah’s. A lovely start to the day. Later on when the sun is shining and it’s nice and warm out, Cora will be playing in the water, while daddy grills up something tasty for us. Calvin and I will be chillin- a bub for him and a glass of red wine for me from the expensive bottle Nate bought me for Christmas. I have been dying to indulge in and each sip will be a celebration of what we accomplished so far. At night, when the sun is gone and the stars are out, we will put the kids to bed. Kiss them on their heads, say prayers together and send them to dream land. (And now my favorite part of the trip) Nate and I will lay in the hammock, cuddled up in a big warm blanket looking at the unpolluted sky, probably lose track of time and savor staying up way too late, talking or just being silent in the comfort each others arms surrounded by the stars.

Take me there now! I’m so happy. This is just what we need right now. A little wind down before we wind back up. Time to forget it all and enjoy. Time to be us.