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

Don't blink

In the blink of an eye, it all could change.
 Before you know it, nothing's the same.
 This life is short, that much we know.
 But do we really understand? And so
 we trudge forward, searching for better,
 Not realizing this isn't forever.
 The bad, the good, nothing is fixed;
 Our time with ambivalence is mixed.
 I watch my chest both rise and fall,
 Hoping that I've given my all
 and made this world happy, at least
 made some impression before life ceased.
 While my time is ticking, what will I do?
 This fate is ours: him, her, me, and you.
 Immersed in every moment, taking it all in;
 That's the key! The secret within.
 Feel every feeling, sing every song,
 Remember the love, peacefully belong.
 My wish is not just for me to make my mark,
 But also for you to lighten the dark.
 Before I know it, nothing's the same.
 In the blink of an eye, the whole world can change.

Waiting on NED, what a slow poke

So, I've been on my chemo pill (called Ibrance) almost three full weeks. Today will be the last day of taking it for this cycle. I'll get a week off, then start a new three week cycle. I'm so far pretty happy with the minimal side effects. I'm really feeling the fatigue today (to the point that it's noticeable to others apparently), but maybe I'll get some energy back this next week. The other most common side effect, neutropenia, I'm not showing so far. That's when your white blood cell count lowers, and you get sick easier. It's very nice that I don't have this side effect, since I have a cute little germ carrier named Brinkley. I've not had mouth sores or nausea (fingers crossed those stay away). Had some minor finger tingling yesterday but that could be coincidence. Hearburn for a couple of days. Terrible digestive stuff the last 4 days, I should go on and buy stock in Pepto and Immodium. This chemo can cause hair thinning, but not really major hair loss. I have noticed a little bit of thinning, but only because when I shower a little bit comes out on my fingers when I'm washing. My hair is thick though so it's not otherwise noticeable. Overall, doing very well. Will have my blood checked again in a month to make sure my white counts are doing well. I of course am having hot flashes from being in menopause, but nothing I can't handle. In two months, we will do some scans to see if the cancer is still visible, or, hopefully, that it's so small it can't be seen (NED: No Evidence of Disease). I may have leveled up to stage 4, but I plan to be here to annoy everyone for a very long time. Love you all, I am so grateful for the love and support I've been shown. Makes me feel like I'm stronger, and that my team, Team Jenn, will always win.

Repo-ductive organs

Thursday morning is my hysterectomy.  Should be laproscopic and robotic assisted with no more than one night in the hospital.

No more babies, but no more periods either.  Hot flashes, but no excess hormones making my cancer grow.  I'm ready, let's do it.  When I was almost done with graduate school, we decided it was time to start trying for a baby.  I got off the pill and a month later was diagnosed with breast cancer.  After chemo, countless surgeries, and radiation, we still had to wait 5 years (so I could take the tamoxifen) before we could try....not knowing if chemo had damaged my eggs.  I got off the tamoxifen to try for a baby on September 11, 2013.  Our miracle baby was born on September 11, 2014.  He's spoiled rotten and will always be.

Surgeries generally don't make me nervous anymore, but this one does a little bit.  The last time I was in the hospital was the first and only time I've been put in ICU.  A few days after Brink was born I woke up panicking and unable to breathe.  I got put in ICU while they ran tests and things and Cody got told he had to take Brink home without me.  My parents stayed in the hospital with me and Cody's went home to help him with Brink.  Eventually they figured out that I had too much fluid on my heart, congestive heart failure, cardiomyopathy.  Possibly from the chemo I'd had plus the stress of pregnancy and eventual c-section.  Feeling like I couldn't breathe was one of the scariest things ever.  My heart is in much better shape now, but that's the thing that scares me.  I'll be sent home Thursday or Friday, what if I wake up having trouble breathing again?  I was so lucky to already be in the hospital when that happened before.

Also, when I was in grad school after going through chemo and everything, my boss got diagnosed with uterine cancer.  She went in and had a hysterectomy and was at home recovering.  The day before she was due back at the doc for checkup, she had pain, but figured she'd just wait til she saw the doc the next morning.  She died of sepsis I think it was.  This was actually how I ended up in the job I'm in now.  I know rationally that there's no reason to think something bad will happen but that doesn't mean I'm not a little anxious.

So send my good thoughts, prayers, unicorn farts, crossed fingers, or whatever you feel will help.  And I love you all, just in case you didn't know.  <3 p="">

Decades. Team Jenn. Let's do this.

Between the support everyone is showing and my doctor's optimism, I'm feeling pretty good today.  About 22% of people live 5 years or more after stage 4 breast cancer diagnosis.  I'm trying to figure out the longest life after stage 4 b.c.  I see 15 years and 17 years and oh I just found a 23 year!  So today at the doc's office I was asking him about the other new medicine and how it differs from the Ibrance (basically they're practically identical) and we talked about the median survival rate of 24 months.  I also mentioned that I've had days of anxiety and stuff over this kind of thing.  He said I really shouldn't worry about 24 months, he has patients that only took the tamoxifen (that I'm on now) and live 5 years...and that my disease progression is so minimal (currently stable, not growing!!) plus we are going to treat it aggressively, etc.  I said maybe I'll be a record setter and he said why not you?  So.....new goal....Celebrate my 61st birthday 25 years from now.  #decades

Pink effing kisses

When I was in the reconstruction phase of breast cancer stuff (after chemo, radiation, mastectomy), I was in a good friend's wedding.  At the rehearsal, I walked with a groomsman who I noticed had a pink bracelet on his wrist.  He showed it to me, it said simply Fuck Cancer.  He told me they had them specially made for his girlfriend, who just had her first chemo for breast cancer.  That girl's name is Candice.  She and I talked the whole time at the rehearsal dinner.  I told her all about what to expect and how to have fun anyway.  When you first get diagnosed, there's a lot of anger towards the disease and other things.  The anger keeps you going.  Then you get remission and there's both peace and anxiety.  Then, for Candice, it came back.  But this chick was TOUGH.  She was Air Force.  Major Candice actually.  I can't stop the tears thinking about her too short life.  It came back in her brain at one point.  She rocked the bald look like no one ever could.  That boyfriend that I was in the wedding with?  They got married.  A surrogate gifted them with 2 beautiful boys.  Candice got to celebrate their first birthday and then some.  She blogged by writing letters to cancer.  And while the anger was probably still there, I feel like it became different after the recurrence.  She would sign her letters Pink Kisses.  I feel like that was a combination of Cancer can kiss my ass plus a quiet acceptance of "it is what it is."  I feel like you have to move from anger to grace in order to deal with stage 4.  I feel like Pink Kisses is the right thing to do.  I can't write anymore about her right now but will share some pictures and stories of her.

http://6abc.com/384223/

https://www.youtube.com/watch?v=uD70PG9OgpY

http://kissestocancer.blogspot.com/

https://www.facebook.com/candice.adams.18

You rang?

Ringing the bell.  It's what you do when you finish chemo, at least it's what we do at the West Clinic.  It was a big deal with my first time through breast cancer.  After weeks of chemo, vomiting, intense bone pain, hair loss, nerve issues, and many other things, you finally finish and you get to go outside and ring that bell.  My chemo buddy actually turned around from ringing it and saw her boyfriend on his knee holding a ring, proposing to her (while all of us inside banged on the windows in celebration).

Today I went to the clinic for my shot and an older lady got to ring the bell.  At first, it hit me hard that I'll never get to ring the bell again.  See when you're stage 4, your treatment doesn't end.  There's no...when I finish chemo....it's just....you treat the cancer with whatever works for as long as it does and then you try something else.  To bring it to the fight analogy, I'm always in the ring fighting, there's no finishing the fight or beating it.  Dancing with NED is the best we can do.  So while I am happy for that woman who got to ring the bell, it also made me a little sad.

For some reason, something I read recently popped into my head.  A Buddhist teacher addressed those who were disappointed and frightened by Trump's winning the presidency.  He reminded us that we are all connected, we are all one.  I am Trump.  That greedy part of me, that selfish part, the part that is scared of others, the part that wants to throw a temper tantrum when I don't get my way, the part that wants so bad to lead and make a mark on the world that I don't care how it gets done....that's also me.  Even if you don't believe all beings are spiritually connected, you should still see the connection existing between all living things in that we are all alive at this moment on a rock hurtling through space.  Our energy connects us by virtue of our circumstance.  I am a Syrian child.  I am a dictator.  I am a butterfly floating on the breeze.  I am selfish and greedy but I am also beautiful and compassionate.  The reason it is important to cultivate compassion is because the more I am compassion the more you are too, because as I am you, so too you are me.

And do you know what else that means?  I am the woman who rang the bell.

Fight like a girl

There are a lot of fighting/boxing analogies when it comes to battling cancer; some I've thought about for years. Things like get back up when life knocks you down, or fight like a girl (with the cute pink boxing gloves), or sometimes I need to let my tag team partner help me. In fact, I've thought for years about writing a song that involves fighting cancer in a boxing match. I used to wonder if there was Make-a-wish for grownups, what would I choose....and I decided it would be to meet Eminem to have him write this song that I have an idea for. Now, I like Eminem a lot, but if I was just wishing to meet people he'd be more like number 6 on the list. But I really feel like this song idea I have is best suited for his style (and let's face it, my life requires a lot of unsuitable language some days).

 [Going to take a brief detour here to explain who NED is, since he will pop in and out of my song briefly. NED stands for No Evidence of Disease. We don't really say cancer is in remission anymore, especially when we are stage 4, because it's probably still in us, just too small to see. So when we have mets (metastatic disease), we look forward to "dancing with NED," meaning when our scans are clear and we see No Evidence of Disease. We will always live with stage 4 cancer, as it's not curable, but the longer we get to dance with NED, the better.]

 Okay so my song is in several parts, and Eminem is basically doing the PPV play-by-play of a boxing match. The opponents are very unfairly mismatched, but this is life, and life is unfair. One of the opponents is either a big monster or a big burly dude, and he represents cancer. He fights dirty, no mercy, and his ultimate goal is to kill his opponent. Round 1, he beats up on this girl with her pink gloves and pink hair. He literally rips the hair off her scalp, punches her in the gut so that she throws up a lot.....all of this fight represents chemo. Maybe he lights part of her on fire (representing radiation) and stabs her chest (mastectomy). (Sorry for the violence but now you see why I need Eminem for this and no one else will really do!) He knocks her out and the round is over, he won the first round.

 Round 2! She has been given special gloves and comes out fighting as hard as she can and somehow manages to knock the monster/dude out! Her trainer, NED, comes out of nowhere and she does a victory dance with him! Dancing with NED, it's great!

 Now time for round 3. She tries to take a magic pill to make her stronger but it just makes her weak and sleepy. The whole place is cheering for her and supporting her, they really want her to win, but the monster comes out and not only knocks her out (maybe getting her liver or breaking her spine or knocking the air out of her lungs....representing common mets areas), but kills her. NED disappears into thin air.  Monster/dude has won the fight, 2 out of 3 rounds.

 The monster/dude is now celebrating. He was victorious! He killed his opponent, he showed no mercy, and now he gets to go find someone else to pick on. He is walking around thinking he is big and bad. But all of a sudden, a haunting melody plays in the wind (I'm thinking Amy Lee for this part), and the wind and the grass and the sun shining down on him and the ground beneath him and the air....it's all filled with this hauntingly beautiful voice and he realizes it's the girl he just killed! She's now ALL AROUND HIM, in everything he sees and everywhere he goes, he cannot escape her. The music gets more and more intense until finally the monster/dude collapses with the knowledge that he was, in fact, defeated.

 Maybe I could turn this into a story instead of a song, I dunno. Anyway, hope you enjoyed reading. I'll get back to fighting now. :*

So long ovaries, goodbye uterus

Today I went to the doctor to have blood work done. The main reason was to see if my hormone levels had decreased (from the shot I got 3 weeks ago) so that I can start taking the chemo pill (that you have to be post-menopausal for). Well my blood work wasn't back yet when I saw the doc but due to Aunt Flo still visiting, he figures they aren't lowering much and we should go ahead a do a hysterectomy so that we can start treating the cancer. Tomorrow I will go meet with the gynecological oncologist to discuss scheduling it. While I had always wanted Brink to have a brother, we knew it would be dangerous for me to get pregnant again (you may remember I ended up in ICU with a heart condition after having Brink), so I'm not super upset about that. I always wanted to adopt, but we had a bad experience with that and now I'm not sure since we don't know how long I'll be around. I enjoyed being an 'only' child for the most part, so maybe Brink won't mind it either. I'm in a little bit of a better mood today, but still kind of gloomy. Was looking stuff up about the Ibrance that I'll be taking. Seeing in black and white the average survival times is jarring....they rave about Ibrance basically doubling the survival rate from 10 months to 20. TWENTY MONTHS. If I see Brink turn 5, I will have outlived the average survival rate, even with this new awesome medicine. There are people who have lived 10+ YEARS though, so that's what I'm shooting for. I want to fight about homework, and argue with a cranky teenager about his hair, and freak out about him driving. Let's get my insides out so we can start killing this cancer. I'm ready, bring it on.

Grief (in moderation)

You know how you are just walking along and all of a sudden BAM! You get hit by a bus? Yeah, that's what grief is like. It just hits you, full force, out of nowhere sometimes. It hit me today that I could possibly not get to raise a bratty teenager. That it's possible I might not make it to his first double digit birthday. Oh and that Momma is missing his terrific two's. Let's combine all that grief and run me over, shall we? But you know what? It's monday, and I'm going to work. So I don't have time for a nervous breakdown. I will manage to find some kind of superhuman strength and push the bus off of me, bandage my wounds, and go about my life as if there's not another bus coming sometime soon.

Enjoyment (in moderation)

Enjoy your life. That's pretty much the ultimate goal, right? But we can't do that 24/7 UNLESS we learn to find the joy in everything. Because in order to enjoy time off, we must work. In order to enjoy health, we must exercise. In order to enjoy love, we must experience loss. I may not fully enjoy working out in that moment, but I enjoy the extra energy and well being it gives me. So in a way, I do enjoy it, I just have to remember to enjoy it in the moment. This is where mindfulness comes into play. The more fully immersed you are in the moment, the easier it becomes to find the joy. I hope you all have a joyful day and many joyful moments.

Imagine

Imagine if you woke up one morning, everything else was the same, but your age in years was 30 years older than it should be. How would you feel? You're not nursing home old age yet but you don't have quite as far to that as you did yesterday. Yes, you might live to be 100 but that's unlikely, so instead of 40-50 more good years you've got 10-20. You don't know when you'll go of course, but that timeline is closer than it was. It's sort of a big shift.....that's kind of what a stage 4 diagnosis feels like. Yes, I might outlive statistics and predictions, just like anyone could live to be 103. But the shift of what's probable changes drastically; that's what hits you in the gut. I'm not saying any of this to be pessimistic, or even just realist....it's just an analogy that I figured out and thought I'd share.

Big girl panties

Cried it all out yesterday, feeling more optimistic today. Apparently, some people who were on the clinical trials for Ibrance, have lived disease free for like 15 years already. Also, I had like a 50% or less chance of living five years after my original diagnosis but here I am. I'm an individual not a statistic. They say only the good die young, so I should have plenty of years left. ;) Hope everyone else is feeling better today too....I've had to comfort a lot of my friends. I feel very loved, and appreciate you all. Now let's get back to life! So....Cody has strep and I'm getting a chest cold. Hope everyone has a good weekend! I'm thinking my 2 year old will be watching more TV than should be allowed but it is what it is! Pink kisses.

Years....not decades

Stage four, I leveled up. Not something a cancer patient wants to hear, but it is what it is. I'm officially living with metastatic cancer. This is treatable, not curable. Luckily, I only have tiny spots and they're not in organs or bones so the treatment will probably get rid of it for awhile (though technically there could still be cancer undetectable by scans). I will have my ovaries suppressed by a shot (and eventually taken out), because hormones make my cancer grow. Once they stop working, I'll start a chemo pill called Ibrance (fatigue and low white blood cell count are the biggest side effects). It's very effective at progression free survival, which means the amount of time before the disease progresses is much longer when you are taking this medicine. I'll be on it for as long as it works and I can tolerate it. So, hopefully, years. My goal is to watch Brink graduate high school. I will fight this as hard as I can and maybe it will stay out of my organs/bones for a very long time and they can write about me in the medical journals. :)

Cancer? I hardly know her!

Never intended to reopen this blog, and maybe I'll switch platforms or something, but my cancer is back. Now, don't get scared, I'm not going to die from it (at least not this go-round). There are only teeny tiny spots in some lymph nodes. I may not even have to do chemo; will find out tomorrow afternoon what the treatment plan is, but it should be a much easier treatment than before. My friend asked me if I was scared and I can honestly say not really. I was scared before my scan results....scared that it was in my bones or liver or brain or something. But teeny tiny spots in lymph nodes? That were too small to diagnose from a scan? Despite the super painful biopsy, I'm in a good place. I'm ready for whatever the doctor wants to do to get rid of it. Bring it on so I can go back to living my life. As my dear friend Candace used to say, Pink Kisses.