One Costa down, another Costa to go.

February 21, 2015vyneza Leave a comment

Michele and I are really piss poor about updating this blog. I’d say I will try to fix that but I’m not one to offer up empty promises, hahaha.

Sooo what has been going on you ask if you don’t talk to us regularly. Well, Michele officially finished treatment in November, her last Herceptin treatment on Nov. 21st. She did have another surgery for revisions. I’ll leave it to Michele to elaborate more hilariously on that if she so chooses. That is definitely one thing they did not give us the heads up about, after a double mastectomy no matter what there will be revisions to get things to where you’re comfortable.

I know some women don’t care and are happy as is, others also choose to go flat, but I guess Michele and I being Cuban-Brasilian are more of the vain sort and would like to keep things at equal or greater value. Everyone has their own preferences and that is totally cool.

By now I think a decent amount of people know that I too have gone under the knife and had a double mastectomy (nipple sparing) with direct to implant reconstruction on February 23rd. I realize I just threw a lot of surgery jargon at you, I don’t expect most people to understand most of that except maybe for the nips part,hahaha.

So yeah I had surgery. And no it wasn’t a matter of wanting to be as cool as my twin or being one of those weird chicks trying to hog the limelight or drama. Michele and I have kept this kinda quiet for the most part, only those around us or speak to us regularly know that we have Li-Fraumeni Syndrome.

Yeah I know typical Costa style we have a syndrome that is ridiculous to pronounce. Personally I’ve heard it pronounced as Li-Fro-meanie, so I’m sticking with that till corrected. Most folks with the syndrome also shorten it and say LFS, less of a mouthful.

Also now some more medical jargon. The short of it is, LFS is a rare cancer syndrome that they suspect about 1000 families in the world have, it could be more prevalent than that. But there is no standard protocol in place to detect more cases.

If you read up about it online much like anything health related it tells you some scary shit no one wants to read about. Here are the bullet points:

Women with LFS have a 100% lifetime risk of developing cancer
Men with LFS have a 73% lifetime risk of developing cancer
Most common cancers are brain, breast, lung, bone cancer, soft tissue cancer, and adrenocortical cancer (type of kidney cancer). However in reality all types of cancers are on the table including rare ones.
People with LFS can have cancer multiple times in their lives and even multiple different types at the same time.
LFS is the gift the keeps on giving, you have 50%-50% chance of passing it off to your children, and unfortunately it can affect them more severely hence there are a lot of pediatric cancers with this syndrome.

I’m going to try and explain how LFS works as best and simply as I can for those who are curious. Essentially we’re missing one of the two TP53 gene that everyone is born with in all their cells. Think of TP53 as the two bouncers at the door who make sure the club doesn’t get too crazy and kicks out the trouble makers. The club being your body and the trouble makers being cancer, when you’ve only got one bouncer working the door, if he gets easily distracted or anything too rowdy goes down he can’t control the crowd therefore cancer develops. This of course is an oversimplification of things and also there are many other facets involved not yet known.

Roughly they believe this scenario is how cancer develops in normal people, the difference being that in normal people its only in one particular kind of cell in one particular part of their body aka lung cancer, breast cancer etc. For people like us with LFS, this can happen anywhere because like I mentioned before we’ve only got one working TP53 in all the cells of our bodies. There are some people who are mosaic meaning its only in certain cells in their bodies but thats a story for another day.

LFS unlike BRCA 1 or 2 (the Angelina Jolie mutation) doesn’t have to be inherited, unfortunately it can be a new mutation (de novo) that starts off in just that one person either due to a defective egg or sperm, or something went wrong during embryogenesis. Which means they have no family history of the mutation hence they have no idea they have LFS unless something happens like they get cancer at a young age or develop a rare cancer etc.

So to make this post even longer, this is why I had a prophylactic double mastectomy to try and lessen the cancers I can get. Of course by the time we’re 40 we also have to do a hysterectomy to reduce the chances of ovarian and uterine cancer etc. Essentially they want all the lady parts, all of thems I tells ya, hahaha.

Its been about a year since we’ve known this so its easier to deal with and make jokes of course. Also like anything else, you have your good days and your bad days. Alright I think this has gotten long enough.

Surgery Day

June 23, 2014vyneza Leave a comment

Yeah so it has been awhile…Sorry about that. It’s funny because I feel like we have a lot to say and share but at the end of the day it is hard to get around to actually writing about it. I never use Twitter and rarely post my thoughts on Facebook so I am not good at utilizing the interwebs for thought sharing.

Anyway Michele had her surgery on May 9th, which was a super stressful day. Didn’t help that I only got like 3 hours of sleep, I left work late then of course got stuck in tons of traffic going up to Boston. Seems like the night of May 8th every construction project in New England had to happen. Not even exaggerating I got stuck in 8 constructions zones, making a 3 hour trip more like 5 hours. I finally made it Boston between 1-1.30am then try to get some sleep for a 5am wake up call. We had to be at the hospital by 6am, we assumed there would be no traffic that early. Ha! Ended up being 20 mins late because there was a lot of traffic.

We get there and they bring us to the OR area where Michele has to change then after that they roll her to another place not sure why, I think for anesthesia? The nurse taking her to the other area told us we couldn’t go but after some sweet talking in Spanish she hooked us up and let us go with Michele to the other waiting area. Of course by the time we got there, another not so friendly nurse kicked us out. Then began the waiting game.

Her surgery took about 5 hours and we were fortunate enough to have Josh’s family and our own family there to help pass the time. I realize surgery in the 21st century was nothing like in days past but still its a nerve-racking experience. The surgical waiting staff were also really good about keeping us updated on what was going on.

Finally by 6pm we were able to see Michele, who was way out of it from all the anesthesia. I should have used that opportunity to mess with her somehow but I was too busy being grateful that she was ok.

Thanks to everyone who called, emailed, texted, and sent delicious care packages.

next batter up…surgery

April 26, 2014vyneza Leave a comment

its been almost a month since michele finished the tougher round of chemo. we were so focused on getting her through the actual chemo that we forgot that she still has to do herceptin every three weeks until december.

michele is triple positive which means her tumor is estrogen, progesterone, and her2 positive and that means those three fun things are fueling her tumor. years ago it was a bad thing to be her2 positive because it was harder to treat. her2 is a protein that cancer cells make too much of which in turn can make your cancer more mean and aggressive like a dude or lady on steroids.

chemo and endocrine therapies didn’t specifically target her2 hence the chances of reoccurrence were a lot higher and with no real effective way to treat it well needless to say not a good thing back then at least.

however herceptin and perjeta have been huge game changers for women who are her2 positive. because they do specifically target the her2 receptors and significantly reduce reoccurrence. those medications bring the metaphorical juice head back to their wimpy pre-roid stage.

michele has finished the first part of her chemo protocol but like i said still has herceptin till december. however we’re also still not 100% out of the chemo woods yet either. she is on a newer protocol so she started off with (taxotere, carboplatin, herceptin, perjeta) then the next step is surgery.

during surgery aside from cutting up your upper lady parts, they’re going to be removing a good amount of lymph nodes from her left side and the sentinel node from right. they look at everything they took to officially stage your cancer and also to see if there is any cancer left.

if everything looks good ie the tumor dies the right way then no more chemo. if mr or mrs tumor didn’t have the painful death we were hoping its a second round of chemo called AC (adriamycin, cyclophosphamide) aka the red devil. its named that for two reasons one its apparently a super brutal chemo and two because it is a red liquid.

unfortunately we won’t know if a second chemo is in the cards until after surgery when they have the pathology report. the tumor has shrunk significantly which is a great sign! but still keep those fingers, toes, boobs, whatever you can cross lets cross to send michele good luck and make sure we killed that tumor dead.

here are some fun pics during the whole chemo process.

before this crazy chemo ride. (josh trying to be artistic and us ruining it by trying not to laugh)

middle aka is the ride over yet?

end- yay, michele is done. damn we forgot about herceptin.

Chemo Team Part 4: The Reckoning

February 17, 2014vyneza Leave a comment

working while watching archer

The only reckoning going on that day is counting the amount of storms we have to go through during chemo week. First there was our buddy Hercules then there was Leon, and now good ole Pax. It seems like the universe is constantly trying us. As if having cancer isn’t bad enough and chemo is no delight you’ve got to also fight against the elements to get treatments.

In my early 20’s I worked the overnight shifts on an oncology floor so I’ve seen my fair share of cancer through that experience but what you don’t really know just how much waiting is involved. Chemo days are a marathon of 7 hours. First Michele has to get blood drawn from her port then we wait around for the results. Then you wait around to see the doctor. When you meet the doctor you tell them of any side effects you’re having. After that you wait around just a little bit more for them to take you to your room for treatment. Then its about 5 hours for them to drip the various different chemo drugs Michele is receiving.

Luckily you can request a private room so Michele, Josh, and I don’t have to worry about being hilariously inappropriate which when you have two Costas in a room is a given. Josh calls us the chemo team which I find funny but true. I think having us altogether helps not only pass the time but its the emotional and moral support to get Michele through this. I couldn’t imagine Michele doing this alone or poor Josh being the only one to cheer Michele up. She can be a tough crowd folks so I help take some of the pressure off Josh. Hahahaha.

I think in this instance three is definitely not a crowd. We each play off each other and each have our strengths to battle such shitty circumstances. I find it interesting people say that I’m a such good sister for driving up for each treatment but I don’t see it that way. It really is the least I can do. Michele and Josh can use my support so not going is not an option. You hear me Mother nature? Keep throwing them crazy snow storms our way but that won’t stop us from getting Michele to her chemo appointments and laughing our asses off all the while.