Full Text of the Underbelly Article

I wrote this for a now defunct website, managed to save the text though not the neat way it was formatted:

Sh*t Happens. Then You Die.

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JENNIFER CALDWELL NOVEMBER 2, 2017


Shit happens. Cancer fucking sucks. We are all going to die.

The weird thing about cancer is that you know from *what* you’ll die. You also know that it will be sooner than you’d like, even if there’s no way to tell exactly when.

You know what really fucking sucks? Having breast cancer at age 28, before even getting to start a family with my husband.

I could stop there, because that did fucking suck, but unfortunately (or fortunately, depending on your outlook, which I’ll get to in a minute) that’s not where my story ends. I fought cancer like the badass I am, with harsh chemo, double mastectomy, radiation, reconstruction, hormone treatments, the works. Eventually, I became a “survivor.” Years later, I finally got to become a mother. Then as a new mother, my own mother passed away from a different type of breast cancer. While my son was 6 months old. That fucking sucked.

You know what else fucking sucks?

After wading through the grief of losing my Momma and the sleep deprivation of the first year (okay, 18 months) of motherhood, I got to tackle the terrific twos with a good outlook on life. I’m a strong, tough, cancer survivor…I’m still a badass. I lost my mom, but my son will know her through me. Things were looking up….up….

… but shit happens, and after almost nine years cancer free, BAM! The fucking cancer came back. And since I had everything breast related and surrounding areas pretty much removed the first time….well there was nowhere to go but up….up…. a level. To stage 4. Metastatic, stage 4, breast cancer.

The doctor’s words ring in my ears to this day,

“Years….not decades.”

I will probably live a few years. Maybe I’ll get lucky and live even 5, or 10, or 15 years. Anything is possible, of course, but the reality is that it’s likely my energy will be leaving this stardust-laden body behind much sooner than I intended. Fucking sucks. No longer a survivor but a thriver, I’m still a badass, but I know no matter how hard I fight, eventually the cancer will win. That’s the reality of stage 4.

However….shit happens. I can focus on the fact that I may not get to see my son grow up or I can focus on enjoying the wonderful world of threenagerhood (yes, wonderful was a little sarcastic, but I digress). I can be jealous of people like my mom who didn’t get stage 4 cancer until later in life, with grown kids, or I can appreciate the things I have that others would be jealous of (like an awesome hubby and our amazing three year old, who really are both wonderful the majority of the time).

No matter how good I have it, many have it better. No matter how bad I have it, many have it worse. And that’s true for all of us, although I guess logic follows that there is one poor soul at the very bottom and one lucky fucker at the top, but that’s not really relevant.

Guess what? You, dear reader, are going to die too. If you’re reading this on The Underbelly, then it’s probably sooner than you’d like. If you’re reading this on my blog, then it may be later, but you really don’t know. The point is…..shit happens and we all die. Some people take that to mean they need to leave a legacy on the world. If that’s your thing, then cool, go for it (but don’t wait, because you never know!). Very few people will leave a legacy that will last longer than a few generations.

I don’t think I will use my limited time left trying to do something that will be forgotten anyway.

And while I want to mold my son and inspire my friends, that can’t be my sole goal in what’s left of my life either. Creating happiness for myself is pretty much the only thing that will fulfill my energy. I can do this by helping others when I feel the need, eating the tacos and donuts or other favorites, sitting on the floor making my son giggle even as my joints suffer, watching the new tv show my husband swears is amazing as he snores next to me, processing protocols at work because life does and will go on, shopping because….well I like it. Laughter. Hugs. That first sip of an ice cold Dr. Pepper.

It’s almost…..freeing.

I give myself permission to enjoy the moments and forget the past. Worry for the future exists, but I can choose to push it away and focus on what I want to do right now.

So while cancer fucking sucks…it is what it is. Shit happens to all of us. Deal with it and find your happiness.

Just do it now because every moment is one step closer to the inevitable. Instead of letting that scare you, find the freedom and peace.

Shots, shots, shots!

I've had some good questions from friends so thought I'd explain a little bit more here.  When you have stage 4 (metastatic) breast cancer it means a few things with regards to treatment that are a little different with the earlier stages.  With the earlier stages they hit you hard and fast and targeted (because the main disease is in the breast) and then hopefully they knock it all out and it stays gone.  If it spreads outside the immediate area (of the breast or the lymph nodes in the underarm) then that means the cancer has metastasized (a fancy word for spread).  So the goals of treatment change.

When cancer spreads outside the initial area, scans can show a lot of where it has spread to, but if it is spreading a little, then it is also likely to be anywhere in the body, just in smaller amounts.  Instead of treating a certain spot like the breast (by surgery and radiation) you have to treat the whole body (this is called systemic treatment...as in your whole system).  When I had stage 3 cancer, chemo was a systemic treatment to treat any possible cancer floating around that we couldn't see on a scan.  After all those main treatments were done, I started taking Tamoxifen (an estrogen receptor modulator), and stayed on it from April 2009 until my recurrence in early 2017 (with a year long break to have Brinkley). So even though it wasn't a majorly difficult treatment, I was continuing to be treated throughout that time period.

Sometimes people do have surgery to have parts of cancer removed in stage 4, but that's mainly as a symptom reduction rather than a cure or treatment.  Since my cancer is slow growing, trying to remove the lymph nodes we know about wouldn't really do enough because I probably have tiny spots who knows where.  Aside from that, the location of my lymph nodes with cancer would be hard to remove and again, it wouldn't change the fact that there's still tiny cancer around somewhere that we need to treat.  The treatment for the little cancer and the tumors in the lymph nodes are the same, so that's the treatment we do.

Treatment for my type of stage 4 breast cancer follows a pattern in general, based on where the spread is and what other medicines have been tried.  But generally speaking, the first treatment is Letrozole.  More recently, they found that adding Ibrance makes the Letrozole work better, so now, the first treatment is Ibrance + Letrozole.  (There are similar meds to both of those that can be chosen as well, but generally a kinase inhibitor and an aromatase inhibitor together are the first line of treatment for this type of MBC.)

The next two choices for treatments are usually Faslodex, Afinitor, and Arimidex.  For me, the second treatment is going to be Faslodex (an estrogen receptor downregulator).  Third will be Afinitor (another kinase inhibitor) plus Arimidex (another type of aromatase inhibitor).

How do you know when to switch treatments?  When one stops working, you go down the list to the next one.  People and their cancers have different reactions to different meds and dosages, so no way to know in advance how long you'll be on one.  I started Ibrance + Letrozole in May of 2017.  At that time, we knew that I had some small cancer spots in the lymph nodes in the middle of my chest and near my shoulder/clavicle area.  Eventually, after later scans, we found out that I had at some time had a small spot of cancer in my spine (sometimes they don't show up until the scar AFTER healing).  I also felt a lump in my neck and that was also a lymph node tumor.  Therefore, the Ibrance + Letrozole got rid of the spots in the middle of my chest, got rid of a previously undetectable spot on my spine, and was keeping my neck and clavicle spots stable (even a small amount of shrinking at one point).  

A few months ago is when the neck/clavicle spots started hurting a bit (not too badly, just kind of like a pulled muscle feeling) and I could feel them a little more.  Scans showed a tiny bit of growing.  Doc was debating on keeping me on the Ibrance + Letrozole OR going on to the next medicine, Faslodex.  Since the growth was so small and slow, he decided to wait and let my new Doc change me over if needed once I got down here to my new job.

So now, new Doc says yes, the Ibrance + Letrozole is no longer doing its job (because the spots are not staying the same/stable nor are the shrinking).  Therefore, time to go to the next treatment in line.

I know this is a lot of info but I keep getting asked questions so I thought I'd try to explain it better for anyone who wanted to know!

Faslodex will be a once a month injection (shots shots shots!).  ;)  Except they load you up a bit the first month, so the first dose will happen, the second one will be 2 weeks later, the third one 2 weeks after that, and then once a month.  It will be done at the doctor's office, and I'll just get my regular check up with blood work and check-in with doc at the same visit each month.

What side effects will I have?  Well, that varies between people just like the other treatments so not sure yet.  Most common is nausea (which I take medicine for already most every day, so I'm not really worried about that one).  Some people have other side effects like trouble at the injection site (usually frail/small people....give me all the tacos!), gastro issues (unfortunately I'm all too familiar with those), bone pain, fatigue, hot flashes and some other possible minor things.  Nothing crazy like IV Chemo, and as long as the bone pain stays minimal, I think I'll be able to handle this treatment just as well as the last treatment.  

But....I'm still excited to have a week or two off of the cancer treatment!  :)

When will I start?  Well, I am going to have a bone scan first, to make sure I still don't have any visible bone mets, but mostly to just have a baseline for future comparisons.  And I just got the notice that they scheduled the bone scan on next Thursday...which just happens to be my 38th birthday.  Fitting, since I was 28 at my first breast cancer diagnosis.  :)  I imagine I'll go back the following week to start the Faslodex.

Feel free to ask any other questions you have!  

Ochsner Oncologist

My new doctor is Dr. Cole, at Ochsner in New Orleans.  My West Clinic doc that has saved my life and gave me extra time with Momma trusts this man to take care of me.  Luckily, I think he is a good judge of character and Dr. Cole seems like a good doctor too.

So, what's the plan?  Well, as y'all know, the lymph node tumors in my neck and clavicle area have grown a tiny bit, but there doesn't seem to be any other spread.  Dr. Cole wants to get a new set of scans and look over everything, but he thinks it's time to switch to the next medicine.

That is scary, for various reasons, but Dr. Cole explained it in a way that sounded much more reassuring.  Just because the cancer is slow growing and not spreading out of the lymph nodes yet, doesn't mean we just let it sit there.  He wants to shrink what's there, rather than just let it sit.  So the next med on the list is his plan.

There is also a clinical trial that he wants to see if I'm eligible for.  It would use the next med that I'm going to take either way, and combine it with something new that may boost that med and make it work even better.  (Side note, I'm working on an idea for a foundation now...stay tuned for more thoughts on that.)

So that's everything in a nutshell.  A little more technical info for those of you interested in looking stuff up or whatever:

I was on letrozole and Ibrance.  Letrozole is what caused my joint pain, that many of you have seen the effects of when watching me walk around with my own special swagger.  So...getting off of that one soon might be nice (although I think it just switches for bone pain as a side effect so who knows lol)!  Years ago, before Ibrance was discovered, letrozole was the first med you take when your breast cancer spreads.  The clinical trials tested it plus the Ibrance, which ended up making it work even better. 

After letrozole, many people go to Faslodex, which is a monthly injection.  This is what I will be on soon, assuming my scans and everything still point to this as the best course.  Faslodex alone is what I would typically do....but they are also studying a medicine that might make Faslodex work better.  That doesn't have a name yet (just like some letters and numbers) but it's a bromodomain inhibitor.  (For comparison, Ibrance is a CDK2 inhibitor.....yeah they don't mean a whole lot to me either.)  Basically, they work at a cellular level.  So if I'm eligible for the trial, then I will get Faslodex and a bromodomain inhibitor.  Otherwise, just the Faslodex.  Looks like similar side effects possible to what I already was on, but I could have some of the other side effects that I didn't have before or some of the same.

I'll update more after I get scanned and discuss it with Doc again.  I don't have my scan appointment even scheduled yet, so be patient, I'll keep doing what I've been doing (letrozole and Ibrance) for now.  :)

Shit I’m grateful for

Shit I’m grateful for -- Grace, grit, and gratitude

Cancer is a gift and breast cancer is wrapped in pretty pink ribbon (with touches of teal and lime for my fellow stage 4 homies, gotta represent!). It’s a gift that we didn’t ask for, we can’t return, we can’t re-gift to someone we dislike (not that we would), and we can’t just toss it out during some fervent spring cleaning session. But still, it’s a gift.

 Nah, I’m just fucking with y’all. It’s not a gift. It sucks. If it taught you grace, fine. If you like grits, holla at me (Southern born and bred). But gratitude? Because of cancer? I’m not so sure. I’ll give it a shot though. I present to you 10 reasons to be grateful to breast cancer.

 1. Forgetfulness: You can tell me a joke and I’ll laugh. You can tell it again a month later and I’ll laugh as hard as I did the first time, thinking it’s new. Chemo brain is real and long lasting but it can be a positive thing (I may be single handedly supporting the Post-It note industry, for example).

 2. Underbelly, Young Survivor Coalition, MetUp, METAvivor, etc. So many people going through the same thing, and we have all met some amazing people due to this fucked up disease. It’s important to not feel so alone and no one outside of this gets it.

 3. Creativity: When you have exhaustion, you have to learn ways around it. You allow yourself to buy convenience foods or order out or hire help. You may even find extra creative ways to be lazy, such as playing the cancer card to get out of anything you don’t want to do. Isn’t it nice to have the creativity to use cancer for living life however you want?

 4. Kiss-My-Ass attitude: It’s so nice to be able to say I really don’t fucking care what strangers think. Some of that may have come from age or elsewhere, but pretty sure cancer plays a role here. I’mma do what I want and if you don’t like it, kiss my ass.



 5. Cooperation: Raising a three year old is tough. Doing it while living with stage 4 breast cancer is extra tough. But I’ve learned to go along with a lot of what he wants because it’s easier on me. I pick my battles. If he wants to go play in the mud, I get dirty with him. I can totally cooperate with him on breakfast choices when donuts are involved. Movies at bedtime? Let’s do this.

 6. Appreciation of the moment: The past is behind me. I have no clue what the future holds. I don’t see another choice besides living in the moment. People meditate for years before they figure this shit out, all it took for me was the “gift” of cancer. (See? I wrote that without rolling my eyes too hard….) 

7. New boobs: Hey I got a ‘free’ boob job, right? Never mind that they are all franken-boobs. Never mind that I had to be bald and sick first. Never mind that the coconut shell expanders hurt. Never mind that 8 years the cancer is back and outside of my fake boobs now. New. Boobs. Save the tatas. NO. Save the women with cancer. Save the stage 4 lifers. Fuck the killer boobs. Um….was I supposed to be grateful for something here?

 8. Crap. Shit. Poop. I get to spend a lot of time with my cell phone reading facebook and stuff because of super fun side effects. To shit or not to shit. Apparently about half of us in stage 4 treatment have ‘loose booty’ (aka the trots, the shits, when you walk under a ladder and you feel something splatter, diarrhea!) and the other half are stopped up/constipated/carrying loads of bricks in the belly. Eww gross, why did I even put that in this article? Because it’s reality. I may make cancer look pretty but it’s not. Deal with it. We have to.

 9. Everyone who loves me: Although some friends disappear, some stay. I lost my mom (to this stupid fucking disease) but I still have my hubby. My friends are great and I love feeling the love from them. Of course, that would probably still be nice without cancer so maybe this one doesn’t count.

 10. Real talk. I can be blunt. I’m okay with that. I’m going to die. You’re going to die. I can be grateful for things in life with or without cancer. Go back and read the first letter of each list item and have a good fucking day.

Writing for the Underbelly

Instead of writing a post here, I wrote one for a website called The Underbelly.  They are about keeping it real and talking about the dark parts of breast cancer.  You can read my first writing for them here: (CW: language and discussion of death)

https://theunderbelly.org/2017/11/sht-happens-then-you-die/

Babies don't keep

They say "babies don't keep."  And that's true, they grow up and change and become people.   I mean, look how gorgeous my baby was 2 years ago!

We frequently wish the current years away by pining for the past ones. Awwww.... I miss that baby face, that toothless grin, those tiny toes.  Yes, that was awesome.  But you know what?  Watching him learn to walk and talk was amazing!  And the terrific twos?  Wow what fun we had!  And now he is 3.

"Time flies," people say.  I do not wish away this current moment.  I do not want to go back.  I want to see what is next, what he's learning now, what he comes home to tell me about..... because I just don't know how much I'll get to see.  And to be honest, neither do you.

Enjoy the homework fights in elementary school and the hot summer days of sports.  Embrace the tumultuous preteen years when they come, because there are many who don't get to see them.  Watch that sultry teenager with pride, knowing that you are getting to watch identity formation in action.  You can still look back fondly on the past, but don't wish away the present because you do not know what the future will hold.

Babies don't keep, but neither do toddlers, or threenagers, or school age, or preteens, or teenagers, or young adults.  Enjoy it all, while you can. 

It's not all Pretty In Pink

Tonight, I felt like a cancer patient.

Tonight, even though I just started my 3rd Ibrance (chemo pill) cycle after a week off, I felt like a cancer patient.

Tonight, even though I have all my hair, I threw up, a lot, it was gross, messy....I felt like a cancer patient.

Tonight, as I worried about what the future may hold, I felt like a cancer patient.

Tonight, as I lamented about how tired I've been and am, as my pimples and mouth sores are few, I know I'm luckier than many cancer patients.

Tonight, even as a stage 4 mets girl, it's okay that I'm a cancer patient.

Tonight, I'm at home in my own bed, with my amazing son and hubby, who love me as a cancer patient.

Tonight, as my stomach churns and I anticipate my daily digestive issues, I'm a surviving cancer patient.

Tonight, I think of how amazing my support system is, fighting with team Jenn, having cancer patience.

Tomorrow.......I'll go back to just being a cancer survivor.

#pinkdecades