One Year Stage IV

Yesterday marked one year since I got that phone call saying my cancer had returned.  All I can remember is thinking, I may have even said but it was a haze, that I didn't want to die.  This disease has a way of truly realizing your mortality, and especially living with breast cancer for four years now, and seeing many women die from it scares the shit out of me.  I understand that no one will live forever, but I had just turned 30 and wanted to see my boys grow up, make mistakes, find love, and work through the hard times in their lives.

That phone call was absolutely horrible.  It stole what should have been a few more very uncomfortable, heartburn filled, stretch mark growing, feet and body swelling couple of weeks.  Instead I got to meet my boys five days later.  If there is anything good about it, is meeting them sooner then we thought.

The past week or two have been hard for me.  The anxiety of this impending date was building up. Cancer never asks you when a good time for it to come over is, it just invades your body and wreaks havoc on everything, trying to kill you.  It is that friend that everyone has that comes into their house, goes through it like a tornado, making a complete mess, then leaves you with the cleanup.  I didn't know how I was going to be, so three panic attacks, lots of sleepless nights, not really feeling myself, and just feeling absolutely alone made this anniversary the hardest one I've ever had.

When you're "done" with treatment that is when the real shit starts.  People want you to be back to normal, or whatever "normal" truly is, and finding your place back in this world is just so hard.  It is my biggest struggle.  I tend to go into myself when I am going through this so I am sorry for delayed messaging, texting or flaking on plans.  I guess I didn't realize what a hold this anniversary and my anxiety with it had on me.

This year has taught me a lot.  There are so many amazing people out there.  Family and friends came together to help Chad, the boys and I out.  Meals, babysitting, formula, clothes, kind words and just an open ear to listen to when I felt I was in a dark place.  We are so grateful.  We also learned there are complete assholes out there, but thus is life.  People will truly never understand what you're going through, and the ones that do not have empathy, well I learned that sometimes people are just unhappy and nothing can help them.

This by far has been the fastest year of my life, and I am grateful for my boys (hubby included) in being the biggest, baddest support system a girl could have.

I am forever blessed for my Oncologist and advancements in science that the medicine Kadcyla was created that killed the cancer that was on my sternum, in my lungs, on the lymph nodes behind my sternum and the lymph nodes in my neck.  With that, along with a hysterectomy I was able to get to NED in just a few short months.  I'll take horrible hot flashes any day over my cancer.

I try not to focus on what Google says about Stage IV breast cancer, because frankly yes I have it.  It is terminal.  The average life expectancy is 30-ish months, but some people live much much longer, have full lives, and others do not.  With that said, I am just trying to live my dash, make as many memories as I can, because honestly although I have cancer, and it has taken so much from me, it is not going to take away my spark.

xo Peace and Love and thanks for letting me ramble.

6 Months

Sam and Will here! We are SIX months old.  Time is going by so fast.  We are growing fast, over 16lbs, but will get the official numbers on Monday when we see our doctor for shots!

We are so wiggly and love exploring everything!

We are both teething hardcore and love chewing on our hands.

Even though I'm teething, I love my naps and mom and dad have said that I love to talk in my sleep!

We are eating all sorts of foods.  Mae and June love it because they get to lick our fingers and faces! We love splashing in the tub.  Mom got us an Ottero, which makes bath time SO much fun!

Mom had a follow up with her doctor and brought us with.  We think there was some sort of mix up and she had to have another Kadcyla infusion (her numbers were fine, so why not?)  The pharmacy took forever to get moms meds, but we were so good and all of the nurses had a blast snuggling us.

**My next followup with my doctor is in March and now I am strictly on my daily pill to keep any stray hormones out of my body**  I do have a brain MRI on February 16th to make sure my pesky freckle is the only thing in there, besides a brain.  So positive vibes and prayers are appreciated for a clear/stable scan!!

Hysterectomy & PET Scan Results

About two months ago I had my total hysterectomy in hopes that by evicting my hormone producing lady parts + the others because they aren't really useful anyways, teamed up with Kadcyla, Xgeva, and Goserelin shot that it would knock the hell out of my cancer.  I was sad to lose them, but knowing that I had to do everything I could to stay around for a long time for Chad, Will, Sam and the third embryo is important.  Like all of my other surgeries, the anticipation was the worst part.  I went in, I woke up what felt like five minutes later and was wheeled back after having amazingly doped up conversations with the nurse and my surgeon.  Apparently I thought they were twins and mixed them up.  So a few hours later, after going to the bathroom, eating a little and taking a few naps, a tired Chad and a physically exhausted Emily were released!  I only had one small incision in my belly button, but holy cow I was NOT expecting to be as bloated and crampy feeling as I was, plus on top of things I couldn't lift more than 10 pounds for the next 8 WEEKS, and the boys were weighing in at 13 pounds. Crap.  Chad took off to help with the boys, changings, and all of that fun stuff that goes along with twins.  Being on pain meds I couldn't drive, so when Chad went back to work it was just me and the boys, hanging out, but I managed with short distances and changing them in the living room.  I had my good days followed by very sore days.  I guess I never learn that when I "start to feel good" to be gentle.  I was not expecting the amount of bloating that I had, not sure if it is because of the air they pump in, the fact that I was just a few months out from delivering the boys or the combination of both?  Probably a little bit of everything.  I'm trying to be gentle on my new body right now, but it is hard, but I just keep telling myself that I have had a lot happen over the past couple of months, followed by eating a bowl of ice cream.  Regardless I'm blessed.

I had my PET Scan last week and needless to say I was nervous.  I know that Kadcyla was working based on my numbers and my neck, but anyone would be nervous.  So I did not eat, got all juiced up and got my scan done.  I was so sad when I got home, seeing my babies and not being able to hold them till dinner.  That was rough, but I was hoping it would be worth it.

and it was.

Reading "Excellent treatment response" was amazing.

The day after I woke up to a phone call from the hospital and I knew it was either really good news or really bad news.  It was good.  My Oncologist knew I was nervous, and wanted to make my day.  She made my year.  After I got off the phone I cried, Chad cried.  It was so good.  Then I started calling and texting family and friends, but for some reason I still wasn't convinced.  With really good things and really bad things I keep thinking that this doesn't happen to me, they must have the wrong person.  I guess I have learned through all of this that I never get my hopes up until it is right in front of me.  After meeting with my Oncologist, I decided to have one more round of chemo for good measure and will not be on Arimidex until the end of time, but I'll take that.

We are truly blessed, and while I am completely aware that once you are Stage IV, you will always been Stage IV, never truly carefree, but with Li Fraumeni I was always going to be under all sorts of surveillance anyways, so that is what helps get me through my moments.  With my boys, my husband, the fur babies, amazing friends and family I keep on swimming! 

Hoping for a boring 2017, just watching all of the milestones that Will and Sam go through!


When times get stressful, I tend to go MIA from blogging, but if you're interested in seeing the day-to-day of a cancer fighting, twin raising, diy loving mom, follow me here!

5 Months

Hey guys, Will and Sam, we are 5 months old, eating a lot and loving life!

Sam here, I'm cutting my first tooth, (my eye tooth, which is pretty unique since most babies get their bottoms in first, but I'm one unique little baby) which is exhausting but I'm always smiling.  I guess my mom's first tooth was her eye tooth...Maybe that is why she calls me her mini.  I'm mesmerized by cartoons, having deep conversations with anyone that will listen and LOVE pulling moms hair.  Mom and dad have been giving me bananas and I love it.  So much better than formula, but I'll take that too!

Will here! I'm finally making more than "one look" and am smiling once in a while...but not very often.  I don't have any teeth coming through yet, but teething is miserable and I'm not happy unless mom or dad are holding me.  At least I'm cute...and a great snuggler.  Like Sam, I love bananas and am so excited to try new foods!!

We recently celebrated our first Christmas! We got to snuggle with so many people!!

We watched our grandma and grandpa get married! How amazing, and hopefully grandpa will finally give us his wings or turkey pumpkin soup recipe!

Life is pretty good with these two, but damn it can slow down! <3

One Year Ago

Last year at this time both my little embryos were thawed and implanted.  Who knew what this next year would bring, although I am overcoming some "minor" hurdles right now I am so absolutely blessed for my sweet baby boys.

4 Months

Hey guys, Sam here! My brother and I are FOUR months old today and life sure is great!  We are laughing a lot, I'm rolling over, and I know Will will soon follow, he is almost there.  We are both drooling a ton, love chewing on anything cold, and mom and dad suspect we are teething.  We get to see the doctor this week to get more shots, at least we get some pretty cool band aids and a nap after!

 

I'm still pretty squirrelly, which makes it hard for mom to get a picture of me!

We had our first Thanksgiving and got to meet so many new faces.  Mom and dad started giving us little tastes of food, yummy yummy in our tummy.

Mom took us and got pictures of us looking like snowmen.....I'm sure mom will use these to embarrass us when we are older.  We love Denise though and she takes amazing pictures of us!

We also got to meet this guy named Santa....hopefully he brings us what we asked for (an El Camino) and mom has nothing to do with that request.

Being elves is exhausting....

***Chemo/Surgery Update***

I get my sixth round of Kadcyla this week, am healing up from my hysterectomy and have a follow up with my surgeon this Thursday.  I'm still puffy feeling and have had a slight bulge at the location where the incision was made so hopefully it's not a hernia and it's just my body taking a little longer to heal.  Granted having a c-section four months ago, and then this surgery less than a month ago, plus chemo and stress, I'd say my body has been through some hell.  I have a PET Scan scheduled for December 27th, with a follow up with my oncologist on the 28th to see if this cocktail knocked out all of the cancer cells.  While based on my numbers and that I haven't had any swelling in my neck since my second round of chemo I am optimistic and hopefully I can meet NED (No Evidence of Disease) and start 2017 on a positive note and get back to work because we all know medical bills don't pay themselves....but I do still have a little scanxiety.

3 Months

Hey it's the boys! We are THREE months old!

We just celebrated our first Halloween....

June was a lobster...a grumpy lobster.

and Mae was the cutest spaghetti and meatballs ever!

My hysterectomy is on Monday and I'm a little nervous for the surgery, beyond mad that I wish I could carry the third embryo and not have to deal with Stage IV cancer, sad that I won't be able to be pregnant again, but oh-so grateful that I had such an amazing pregnancy and carried my boys so long and have options.  I'm just a whirlwind of emotions and kind of a mess, but I hide it well.   

I found this a few days ago and thought this was perfect for my situation:

I just had my fourth round of chemo and my doctor told me that she was excited with how my numbers were at and based on that she hasn't been able to feel any lymph nodes in my neck for the last couple rounds it seems like it's working.  Rather then getting the PET Scan in November like I thought, we are waiting till December so I can get about two more rounds in and see how much ass this chemo cocktail is kicking.  My side effects aren't nearly as bad as the first time around but I'm still getting them.  I wasn't sure if my tiredness was from chemo or babies, or having babies then going on chemo, but now that the boys are sleeping consistently through the night I realize my exhaustion is indeed from the chemo.  My hands seem to be pretty sensitive (neuropathy maybe?) and I've noticed my hair seems to be thinner.  Not thin enough for everyone to notice, but I do.  Poor bathroom drain.  Finally, bloody noses...a few times a week, and when they happen it's a bloody massacre.  But I keep reminding myself that although I feel like shit, I can only imagine how the cancer must feel.

*Continued prayers, positive juju or whatever you can muster up would be amazing*

2 Months

Hey guys, it's the boys!!  We are two months old, eating like piggies and love alternating who stays awake.

I'm Sam....the night owl.

...and I'm Will....the pooper.

We love spending our days lounging.....

and mom loves taking pictures of us.....even when we are a mess.

Seriously mom, put the camera away...or else.

And here was little Sammie earlier this week....the faces this kid makes.

 

...on a side note, I had my third round of chemo today.  I'll be getting a PET scan in early November to see if the Kadcyla is working on getting me to remission, once I know a date you guys will!  November 7th is the date that I will be getting my total hysterectomy.  My anxiety got the best of me today in my consult appointment with the surgeon and I cried....not because I was scared of another surgery but because I am sad that while it was my game plan to have my lady parts removed, I didn't plan on it so early.  It's another thing that cancer stole from me...BUT what keeps me going are my two babies.....they make ALL of this worth it.

As of right now I'm relaxing with my babies *hubby included* enjoying baby snuggles....baby snuggles are a cure-all to any ailment.

1 Month

Happy ONE month to Will and Sam! My sweet boys bring such love and joy to mine and Chad's lives, we feel so complete!

Trying to get a nice picture of each of them was difficult...but their cuteness makes up for it!

This is Sam:

And Will is laying flat:

They have an appointment with the pediatrician this week, but I'm guessing they are around 8lbs each as of today!  They love to poop in freshly changed diapers, keep us awake all night and snuggle.

Will & Sam I love you more and more each and every day, you amaze me, and to just think three years ago you were being created.  Your father and I are so blessed.

Shots, Shots, Shots

Well, looks like I'm getting a port put back in on Monday.

I had a PET Scan yesterday to see what those pesky cancer cells have been up to.

If you've never been in a portable PET scan, this is the room you percolate in after they juice you up.  It's small, kind of feels like an airplane bathroom, but with heated blankets.

No amount of Ativan could help me when my Oncologist came in and told me that I "lit up" on my sternum, some lymph nodes behind my sternum, a few small nodules in my lungs and the original spot I noticed on my neck.  Fuck.  Fuck. Fuck.  Stage 4.  I have a hard time even saying it.  I kept thinking of everything I have ever done, and what did I do wrong.  It's hard not to, but unfortunately my hormones are crazy.  The hormone suppressing drugs I was on before was keeping it at bay, but when I went off of them to get pregnant, unfortunately that is what happened.  I am just extremely blessed that this happened at the end of my pregnancy, the boys were/are healthy and everything was caught super early.

She cried.  Chad and I cried.  But then she said she had a plan.

• Kadcyla I.V. every 21 days
• XGeva shot monthly
• Goserlin shot monthly
• Tamoxifen *I have never looked more forward to taking a medication*
• Baby Aspirin
• Calcium/Vitamin D
• Follow up PET Scans

My doctor did say something that is amazing:  "Emily, you are going to live a long life"....Doctors don't normally say that in these types of situations unless they are fairly confident.  All of the nodules and lesions are quite small, and nothing has spread to any of my organs (besides my lungs).  With that said, that leaves it relatively easy to treat.  

So with my "I'm not fucking around anymore attitude", through teary eyes, I asked my oncologist when could I start chemo. She asked me when I wanted to so today I got the ball rolling with the Xgeva and Goserlin shots....definitely not the type of shots I am used to.....I'm more a fan of those that are cold and taste good on a hot night, not come through a syringe.  Regardless, I'm officially starting chemo, get my port in Monday morning and get the I.V. of Kadcyla after the ports back in.  On a positive side note, I shouldn't lose my hair, so no Mr. Clean look for this lady.  Although I had some pretty sweet Halloween ideas picked out.  My oncologist made tons of phone calls, and also got the nurses back in infusion to clear a room for Chad, the boys and I, so I could start the injections.  I love them.

And two week old boys don't care if you are in the middle of getting chemo, when they are hungry they need to eat.  So my wonderful, awesome, multi-tasking hubby managed to take care of business! <3

And I will be getting a hysterectomy in a few months.  Once my body is healed enough, I'm going under.  I thoroughly enjoyed every ounce of being pregnant, the growing, the first time I felt the little boys move around, even the stretch marks.  While I had hope to carry the third down the line, it is more important for me to be there for my boys and have them have a mom who will embarrass them at their games.  Doing that is sad for me, because then it will assure that I cannot carry my third little embryo, but I know that with this cancer coming back, as aggressively as it has, I cannot put my life to chance anymore.  So out goes the hormones.  

I am sick and tired of cancer running my life, coming in when all I want to do is snuggle my babies, so I'm putting on my game face and not fucking around anymore.  I am mad.  Beyond mad.  This should be a time where I am having sleepless nights with my little nuggets, watching their smiles, cute grins and changing diapers upon diapers and dodging pee and poop.  While I'm doing ALL of that, I'm also fighting for my life.  I want my boys to remember me and I intend on having it that way.

This is all very raw for me right now, and any prayers or positive juju is well received. <3