Keeping Abreast of Change

Full Text of the Underbelly Article

2019-06-28T10:18:00.000-05:00

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!

2018-07-31T13:21:00.002-05:00

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

2018-07-18T09:25:00.002-05:00

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

2018-05-23T17:16:00.001-05:00

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

2017-11-02T15:10:00.003-05:00

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

2017-09-19T10:54:00.000-05:00

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

2017-06-29T20:34:00.003-05:00

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

2017-06-06T21:06:00.000-05:00

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

2017-05-23T10:37:00.002-05:00

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

2017-04-18T19:18:00.001-05:00

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.

2017-04-12T21:22:00.002-05:00

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

2017-04-11T12:23:00.002-05:00

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?

2017-04-06T13:48:00.000-05:00

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

2017-04-04T13:51:00.001-05:00

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

2017-03-28T14:17:00.000-05:00

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)

2017-03-27T09:54:00.001-05:00

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)

2017-03-20T11:12:00.001-05:00

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

2017-03-13T12:40:00.001-05:00

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

2017-03-10T14:47:00.000-06:00

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

2017-03-09T09:12:00.001-06:00

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!

2017-03-07T09:32:00.002-06:00

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.

As the Stomach Turns

2011-10-21T09:39:00.002-05:00

Some of this may be TMI, but I'll try to keep it toned down.

For the past month or so, I've had random bouts of nausea, vomiting (only about 5 times total), and diarrhea (that's the TMI part, but I'll leave out the graphic detail). Since it was random at first, and since I've always had a nervous stomach, and since diarrhea is more familiar after my gallbladder removal, I didn't worry too much about it. Now though it has become more frequent and coupled with immense fatigue. Again, fatigue is no stranger to me, but napping in the middle of the day after having had a full 9 hours of sleep the night before is. Went to a doc Sunday, she said my blood work was fine, I probably have the stomach flu. Prescriptions: anti-diarrhea, anti-nausea, and anti-biotics. Stomach flu doesn't usually last a month, but we'll see.

Meanwhile, I've developed a tenderness/pain in my rib area on my cancer (left) side. At first, I thought I was feeling a lump, but doc said it felt more like a swelling. Yesterday, went to my cancer doc to see what he thinks. He said, doesn't really feel like a mass. Possible issues in that area are ribs, stomach, and lower lung. Blood work was still fine, liver enzymes good. So, he scheduled me for a PET scan Monday. I haven't had a scan in a long time, so I'm sort of glad for it. Depending on what the scan shows, he may order a bone scan, or may send me to a stomach doctor.

Told my boss all this today and he said, don't you panic? I said, not anymore than usual! I worry daily, but my anti-depressants keep it from getting out of control. My cancer doc didn't seem overly concerned, so why should I? I think every little ache and pain is cancer related, so this isn't really anything new, lol. Cody on the other hand is a bit stressed about it.

I made it to work today, mild nausea but bearable. The rib-area pain is pretty annoying today though. Who ever sits around on a Friday wishing it were Monday?

Pics of Memphis, karaoke, and NKOTB

2009-07-14T09:57:00.000-05:00

Random

Wow, an update from me! ;)

2009-07-13T11:44:00.001-05:00

--Done with radiation. Woohoo! Now just checkups and pills and shots and such. Easy-peasy!
--Hair is growing back, I wore it spiky the other night. Will post pictures soon. :)
--Sorority life on facebook is addictive. Not sure why, other than it gives me something to do that is basically mindless (and you get to play dress up!).
--Couldn't find anyone to go with me to AI auditions, so I guess that's over. Maybe one day I'll find a band that needs a part-time lead singer, lol.
--We are going out karaoking August 7th to celebrate Rachel's and my birthdays. Come if you can! :)
--Turned in the MS state adoption/foster form. Haven't heard anything yet.
--Rachel's mom's close friend runs a home for pregnant teens. Some of the teens give their babies up for adoption, by picking a family by looking at scrapbooks. I have one more page to do and then I'm sending in our scrapbook. :) I'll post pics of it too.
--Cody and I are in the early stages of house hunting. We are thinking Hernando/Bridgetown area.
--I guess that's it for now, hope everyone is doing well! :D

Quick Update

2009-06-05T07:33:00.003-05:00

I realize I haven't posted here (or much of anywhere) for awhile. I do keep up with facebook status' though. :) I am just beginning to get a burn under my arm from radiation. I've done 15 treatments and have 20 to go. I plucked my first gray hair this morning. I'm doing Relay for Life tonight. My insurance won't cover Zometa as preventative. Gonna be a bridesmaid the middle of this month; hope I'm not too burned to wear my fake boob. Don't see my medical oncologist again till the end of the month. "Did they get it all" and "Are you gonna be ok" are questions I am sick of hearing because there is no answer to them. Cody's grandfather (who he was really close to) is in a nursing home, probably close to death. I used to be sad when I saw old people because they looked so frail; now I just hope my body has the strength to make it to 'old.' Antidepressants are starting to kick in I think; I haven't cried in almost a week. Need any clarification on the above, just ask! :D