Vanessa

Back to the Shack

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Nope, it’s not the best Weezer song. But I can appreciate it. Makes me think of way back when while still being very aware of the present.

The best word to describe how I’m feeling is in Portuguese, saudade. The closest English word would be nostalgia. But saudade evokes something more intense — a powerful longing for what was or for someone you miss.

Although I’ve come a long way, I’m staring down the barrel of yet another surgery for me. There’s also my sister’s reconstruction surgery. I find it puts me in no man’s land.

Part of my identity has centered on being a twin. As odd as some folks might think sharing a birthday with someone is, twins find it just as odd not having someone to share that day and other big milestones with. I always use the analogy that being an twin is almost like being married from birth. You have your own personalities, likes and dislikes.

And yet, there is something unique in sharing your life and history with one person who also happens to look just like you. Sharing clothes is definitely an awesome perk. It’s not a relationship without its difficulties but there’s a certain amount of effortlessness that’s impossible to replicate. You did all the hard stuff of learning to share and compromise while trying to establish your own identities. So, now as adults, a lot of the pitfalls of adolescence helped you both forge a strong bond.

Of course, there’s also the unescapable genetic thing. We just tend to like similar stuff, do similar things and have similar reactions. But, we’re still our own selves.

This reminds me of the whole misconception around clones. Sure, we’re nature’s original type of clones. But, even with DNA that’s 100% identical, we’re different people. We’re very close, but we will never be the same person.

The one thing I wish we didn’t have to share is a bilateral mastectomy and reconstructions. As much as this experience has been hard for me. I would go through it many more times if it meant that my sister didn’t have to.

Unfortunately, life doesn’t give you that type of choice. Instead,  the choice you have is how to deal. So, we’ll have our struggles and fall.  But, fuck it. We’ll just get back up again. We’ll rely on each other, our husbands, our friends and our family. We’ll use dark humor to make each other laugh and deal with this difficult hand.

But, you know what hard times. Tough titties. We’ll just keep coming back until we say we’re done. Then, we’ll tell you to screw off. That’s just how we are.

 

 

 

 

Surgery Day

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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

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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)

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middle aka is the ride over yet?

 

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

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Chemo Team Part 4: The Reckoning

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working while watching archer

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.

“No One Gets In To See The Wizard! Not no one, not no how!”

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my scary face i'd like to show dr. oncologist.

my scary face i’d like to show dr. oncologist.

The two weeks waiting to see an oncologist was about as fun as waiting to find out if Michele had breast cancer or not. It’s like ok, she has cancer now what? We still have no answers to questions such as what stage is it, what grade is the tumor, what is fueling the tumor, what is her survival rate etc. Which prior to this whole diagnosis, I had a vague knowledge about that stuff but you start to pay attention real quick when that shit is happening to someone you love.

All my life people have called me pessimistic but I like to call myself a realist. As a side note I can’t remember exactly which study it was but there was a study with two groups, one group considered themselves to be pessimistic and the other group considered themselves to be optimistic. Each group was presented with different situations and later had to relay what happened. The researches discovered that pessimistic people had a more realistic perspective of what actually transpired. Sooo there is my justification for being a “realist”, just one scientific study, hahaha.

Anyway I prefer to prepare for the worst case scenario because thats how life has been for us. It is easier for me to expect the worst and then be pleasantly surprised rather than thinking its all unicorns and puppies only to be hit upside the head with a hammer. Needless to say it is hard for me to try and be optimistic. Despite my difficulties with optimism, I did allow myself the chance to hope that it was a mistake or perhaps it really was benign. Especially since we had a rough start in life and finally getting to that point where it wasn’t all about survival but starting to be about enjoying ourselves and trying our hand at all the things we talked about doing. It didn’t seem fair that this could happen now after all we’ve gone through, but typical Costa bad luck prevails she doesn’t care if we’ve hyphenated our last names or not.

I was also thinking about how there are tons of people on this planet who suck and are overall terrible f***ing human beings but they’re cancer free. The universe surely can deal a cruel hand to unsuspecting and undeserving people. You would think Michele doesn’t smoke cigarettes or meth and she barely drinks; she isn’t making out with plutonium or hanging out in front of the microwave for 20 hours straight. She is 34 years old, eats healthy and exercises and all that noise but none of the protects you from cancer. It lessens your chances sure but it is no guarantee.

During the maddening wait time and at Michele’s urging I also got checked out. I am in the clear. For a second we were scared because they did see something in my own Lefty as well but they’re pretty sure its a cyst which means just getting checked out more often just in case.

For those few days before we knew what it was, it was incredibly upsetting but also relieving in a strange way? Because that means Michele didn’t have to do this alone but at the same time I was worried because then I might be too sick to help her out. After I got the ok, I know people were well-meaning by saying great news that I’m fine however it made me feel worse. My sister still has cancer and yeah I dodged a bullet but strangely I wasn’t feeling good about it at all.

Me feeling bad was because I feel guilty. I am familiar with the term survivor’s guilt, I do have a BA in Psychology so I know how the whole world works, hahaha. Previously I thought that it didn’t seem fair that in those kind of situations anyone felt guilty. My rationale was that some times it really is up to chance and it didn’t make sense to feel guilty about you surviving and the other person didn’t because unfortunately in this world not all of us can make it. We all just try our best and hopefully chance is on our side and we survive.

I know it doesn’t completely apply here thankfully because Michele is still kicking but its something I can relate to because I do feel this incredible guilt that this is happening to her and not me. Of course I would be upset if this was happening to me but its much easier to accept and deal with if it were me. The thought of being twinless is unbearable. Yes, there is that whole concept about how the bond between twins is special and as trite as it sounds, it really is. Unfortunately we can’t do cool party tricks like the Crimson Twins (G.I. Joe) where we can feel each other’s physical pain or other awesome stuff like communicate telepathically but nevertheless my twin is the most important person to me and I can not imagine my life without her. (Jason you’re up there too buddy, don’t worry)

The whole twin experience is something rather indescribable and when attempt to describe it just sounds kinda lame. But for non twins, imagine having an instant best friend who knows you better than anyone else ever will; who can tell how you’re feeling and understands you without explanation. We can both be looking at the same thing and find it hilarious, there is no need to explain its funniness because you both just get it. It really is a morale booster too for any jokes you tell other people that fall flat because at least your twin will always laugh, so its like having an Ed Mcmahon who looks like you but isn’t trying to sell you Publishing Clearinghouse junk mail.

All the fun thoughts you have while playing the waiting game with Dr. Oncologist continues.

So it begins…

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I know it seems a little cliche once you or a loved one gets diagnosed with breast cancer to start a blog and it is. Michele and I talk every day so we’re always caught up on each other’s lives.

This is more for those family and friends who we love dearly, but you know how life gets in the way and you can go months without talking but still pick up right back where you left off, this is more for them. It is also a good venue for us to be able to work through the day-to-day with this situation. For those who know us, we do like to talk a lot so hopefully this will help save some earballs along the way. Hey, maybe it’ll even be somewhat informative.

I would like to give a head’s up as well. People who know us know can vouch that we can’t help but be brutally honest in a semi-tactful way. We also do have an off-color or wicked sense of humor and tend to curse like sailors. I don’t plan on sanitizing our blog to accommodate the more sensitive types because this is who we are.  So, this is the official head’s up so no feelings get hurt, especially Michele’s. Hahaha. Following good ole’ Popeye’s stance, “I yam what I yam…”

The weekend of October 19 was an awesome, Michele, Josh, and Lily came down to visit us in Mount Vernon. We had tickets to for the Horseman’s Hollow at Philipsburg Manor for 8.30pm, you have to be there on time if not they don’t let you in supposedly.

Of course as per usual for the Costa-Bells, they were running late. It was about 8:10 p.m., Jason and I are waiting outside of Philipsburg Manor with neither the Bells nor a Costa. I’m stressing that we’re going to miss out on all the Halloween fun. Thankfully, they did show up around 8:15 p.m.  Unfortunately, we still had to stand around for another half-hour so all that death-defying speeding was for naught.

The haunted house was OK, I have a rather high threshold for scary things which is unfortunate for those around me because that means the haunted house workers love the challenge of trying to scare me. But, it only terrifies those around me more, wah wah.  I also unintentionally accomplished the goal of traumatizing Lily who now needs many years of therapy and probably won’t set foot in another haunted house until she is 25. Sorry Lily, I’ll chip in for those therapy sessions.

That Sunday, we did our usual routine, Josh spending endless amounts of time making my hair look amazing while we all watch television and talk mad smack about whats’ on very Mystery Science 3000ish.  This particular weekend the movie to illicit our perceived hilarious criticisms was The Matrix***.

Sorry my memory is shot so I can only remember my own criticisms but rest assured Michele, Josh, Lily, and Jason were chock full of them too. My criticisms included: Out of all the people to be the One, it had to be Keanu Reeves? Sorry for The Matrix lovers out there but Keanu Reeves will always be Ted no matter what role he plays. But good for him making a blockbuster career on two facial expressions, unconvincingly slightly surprised and unconvincingly surprised. Also using people as a power source seems to be very inefficient, I would think that the machines would have come up with a better solution than that.  Anyway I digress…

That was our last blissfully ignorant hang out session before the cancer diagnosis. Not too long after that Michele mentioned she had a lump in her left breast which has been there for about a year. The lump had grown in size, but she didn’t seem too worried. She was also sick with a cold and her armpit recently started to swell up too, all of which was rather painful. She saw the doctor and was sent for a diagnostic mammogram and ultrasound. That same day, they fit her in for the biopsy.

It really sucks they don’t give you the results right away, instead you have to wait days to get them. Even still Michele pretty much knew at the mammogram and ultrasound she had cancer based on what she saw on the ultrasound and the way everyone was treating her. But until you get confirmation your mind is all over the place, maybe they made a mistake and everything is fine? Maybe everything is much, much worse? What the hell is going on?

After what seemed like an eternity (in reality it was about 6 days) we got confirmation that Michele indeed did have breast cancer. But, that was all they could tell us. So yet again more waiting! We’ve already lost a year’s worth of time.

Instead of hurrying up, we would have to wait until she spoke with her oncologist for more details. That appointment wasn’t going to be for another two weeks. Just the beginning of this journey is moving at a snail’s pace, this is going to be a loonnnnggg ride.

***Disclaimer Before the angry hate mail about how I didn’t care for The Matrix begins. I didn’t watch this movie until fairly recently so I missed how cool it was back in 1999. Also, I should mention I worked at Blockbuster and a movie theatre as a young adult. Those job experiences helped create an unfounded hatred for specific movies because of how people can be such d-bags to customer service workers.