Back to the Shack

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.

 

 

 

 

One Costa down, another Costa to go.

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: Round Two

After my first surgery about 10 months ago, my plastic surgeon decided to make me asymmetrical so that when I had radiation, things would even out. I’m not sure how that works. But, that last minute decision on her part made things extra awesome for me when I didn’t need radiation after surgery.

I knew going in that reconstruction isn’t a perfect science but no amount of mental preparation could give me a sense of what this is like. I’m starting to understand why people who have reconstruction surgery usually have many surgeries. No one really explains how it’s an iterative process. It’s like having surgeries to go through puberty in your boobs.

I hadn’t thought of my boobs or chest so much in my whole life. I realize now how much I took them for granted and underestimated what it takes to get something of equal or greater value.

It’s still early to tell whether the asymmetry is better. I am much happier with this second round of implants. I was naturally a DD and the first surgery left with me with the equivalent of a full B or small C cup. As much as it was nice to have a smaller size, it didn’t look right—at all.

The challenge with implants being used to replace a natural breast is that an implant can’t replicate the inner-workings of  a breast. For woman having augmentation, their breasts have tissue and the implant is adding to it. The implant doesn’t have to fill the volume and mass of a breast as it does for a mastectomy patient.So, for woman with reconstruction, you have boobs, but you lack the profile or projection of a natural boob or cleavage.

Luckily, anatomical implants which are what I have now, these help with both projection and cleavage. But, it’s still nowhere near to what I had. I’m aware of how much my big boobs offset my tummy. A bigger chest gave me a  better boob to gut ratio. I’m sure tamoxifen isn’t helping me in the tummy department.

Recovery this time around has been brutal but I don’t have drains. So, that’s been sweet. My sister’s double mastectomy is coming  up in a couple of weeks. I have to say, she has huge lady balls. I had cancer and really didn’t want to go through surgery. She is having surgery as a preventive measure. I feel that’s a much tougher call to make.

 

 

 

Get the Port Outta Here!

Holy shitsnacks. It’s been a year. In that time a lot has happened; I found out I had cancer, froze an embryo, had a port put in, started chemo, ended chemo, had my boobs removed then replaced with implants, continued herceptin, ended herceptin along with countless other scans and prodding.

So here we are, one year, one month, and a couple of days after my diagnosis, it’s been a physically and emotionally difficult time. But, I’ve been given the OK to get my port out. This is a huge step and tether to cut loose (literal and figurative).

From a purely practical perspective, I’m loath to lose my port since I have piss poor veins. I also don’t have a high threshold for being stuck multiple times, I’ve been known to pass out from time to time. It usually goes like this.

I say, “I’m a difficult stick plus I can only be stuck on my right side. My left side was my go-to but I’ve had lymph nodes removed.”

Hospital person says, “Oh, don’t worry. We’ll get this on one try.”

After the third attempt…

I say, “Wow, third time’s a charm right. Hmmm, I’m not feeling so good.”

Thud. I’m out.

So yeah, having a port, although uncomfortable at times, has been unbelievably helpful.

I’ll miss it. It was my tie to life as a professional patient and partially a cyborg. It made my life easier and for that I’m grateful.

Herceptin Milestone

It’s the last one. Coincidentally, it falls on the same day exactly one year ago that I had my first appointment at Dana-Farber.

I didn’t ring any bell.  I’ve heard about the bell later on. I wasn’t aware that was an option. I totally would’ve done it. It would be less of a symbolic gesture and more like fulfilling a childhood dream of banging a gong or hearing the Liberty Bell ring.

A year on, my Herceptin appointments have become part of my routine. Mary and Maggie, Josh’s aunts who feel like they’re my own aunts, accompany me during my infusion. I get to spend time with my chemo nurse Ann who clears out my port and makes getting an infusion as comfortable as possible. Despite the drive into Boston, the experience is not too bad.

Herceptin doesn’t have the same side effects of traditional chemo. Sure, you pee a lot afterwards, and it makes your pee smell weird. Not asparagus weird, more mediciney kinda weird. Also, there’s fatigue. But again, completely different than chemo and much more manageable.

I also felt a certain amount of comfort or security with Herceptin infusions. Herceptin meant that I was on a treatment with manageable side effects that was making sure cancer doesn’t make a comeback.

So, today was my last one. I’m hoping soon after it means my port is coming out too. Not sure what I’m going to do with all this free time. Just kidding, I got plenty of appointments to go.

I think this is one of many first steps to going back to life post-cancer.

 

Halloween at MGH

Why not still dress up even when you’re 35-years-old? It’s Halloween and also my penultimate Herceptin treatment.

It’s a homemade costume since typical Costa-style I waited until the last second. I’m not terribly crafty, but I had fun. I made a few people chuckle at work and MGH. So, it was totally worth it.

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Herceptin Continues, Hooray for Hair

 

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It’s been a few months since surgery and my last round of chemo.  A couple of months after surgery, I started physical therapy. I can’t say enough good things about it.

Sure, it’s a pain. Who has time to go anywhere twice a week to do exercises for things you had been doing for years like buckling a seatbelt? But…I can’t imagine what recovery would be like without out. I feel like physical therapy has been a great contribution to my recovery and enabled me to regain my range of motion and start working out again.

I find it frustrating that for most major surgeries, physical therapy is a given. But, for a surgery in which you have your breasts removed and reconstructed, not so much.

Physically, I’m still tired, and my brain isn’t what it used to be. I have a couple of months of Herceptin to go. Herceptin is a wonder drug for Her 2 positive women like myself. I’m grateful that it is around for my treatment and feel sad for women years before me who went without it.

It’s not all doom and gloom. I have hair. I look less like a cancer patient and more like some badass lady who cut and dyed her hair cos she feels like it. Ha! One funny thing is people cos of my hair think maybe I’m antiauthority, a poser since I don’t have a lot of tattoos, or way cooler than I am.

Instead, I’m just a lady who had cancer and loves having some damn hair. I also want to have some fun with it. Besides, the color goes well with my color combo. So, why the hell not?

 

 

Post Surgery, Still Recovering

Well, it’s been almost 3 months since surgery. The road after surgery has been tough. The pain is one thing but it’s also difficult to get used to the changes your body has gone through. I guess it doesn’t help that I’m recovering from chemo and surgery.

Because of the ALND (axillary lymph nodes dissection) on my left side, I had an unusual feeling of cording on my left arm. I can best describe this as feeling and seeing a rubber band of muscle when I move my left arm. It hurts and definitely feels weird to move. On cancer.org, it states that this is common after ALND surgery.

In an effort to regain my range of motion and make sure I’m not hurting myself, I started physical therapy with a wonderful PT named Jane at MGH Waltham. She’s worked with breast cancer patients and understands the unique situation we face especially those with lymphedema. She’s also so kind and supportive which I really appreciate. It’s a vulnerable time.

I’m also still getting used to what my chest looks like. I knew that I wasn’t going to have what I had before. But, it’s hard to get used to what I have now.

The asymmetry is a story for a different post. I have to underscore how difficult it is to see the asymmetry plus the discomfort.

I know a lot of folks are under the false impression that breast reconstruction is a boob job, nothing could be further from the truth. The only two things are in common are that some reconstruction types use implants and that the surgery is on your breasts. After those two things, breast reconstruction is nothing like a boob job.

I’m grateful for living today and that there are different options for reconstruction. But, ultimately, it’s an attempt to recreate what you had. It’s not perfect. It is not an exact replica of what human breasts look and act like.

The implants used for reconstruction weren’t initially intended for that purpose. They were intended to be used in women who still have breast tissue. When you have no breast tissue, the physics of an implant are odd.

There are things that make it better. Anatomical implants are being made more widely available in the U.S. and those implants are better at replicating a natural breast, lookswise. Feelwise, not so much. But it’s all about give and take, right?

For women who weren’t able to keep their nipples, there’s now 3d tattooing done by professional tattoo artists. There’s also nipple reconstruction but it seems results can be mixed.

Anyway, despite all the options and types of reconstruction, it’s not a walk in the park, it’s not consolation prize for having or preventing cancer. Reconstruction takes time and recovery. And, I don’t regret it.

It’s just something you do cos you feel it’s the right choice for you.

The Lake House, not the Keanu Reeves/Sandra Bullock movie

I’m getting stronger each day. My hair is on it’s way back, even though I look like I shaved my head last week. One of the goals I had during the dark days of chemo was to get to Schroon Lake this year along with my sister, her husband and her husband’s family.

The Massimos are generous and kind enough to let us spend time with them in the beautiful and peaceful Adirondacks. During the most difficult times, I would just picture the smell of the summer, the feel of the sun, the coolness of the lake’s water. I would think about the overwhelming beauty of the night sky where you could see the Milky Way and feel lost in the awesomeness of space.

Having these visions of summer, it helped me find my happy place where I could ignore the anxiety and pain I was experiencing.

On our drive to Schroon Lake, I was reminded of how the solution to heal people (other than bleeding them or cupping) was to send them to the country away from the city and its ills. I used to think that it was silly to think someone with something like TB is going to get better after being around some trees. Whether or not it “cures,” after so many months of being sick, getting away to be surrounded by summer, I finally had a chance to just be.

Halfway Through

As much anxiety as I felt about the prospect of surgery and the pain I associated with it. Having gone through it, it’s amazing how fuzzy my memories are from that time.

I’m sure that the combination of heavy narcotics plus being emotionally and mentally tapped out from chemo has a lot to do with the lack of clarity. It makes me think of those memories you have from childhood that you have but you’re never quite sure if they’re real or something you’re kiddie brain made up.

To sum up the particulars of what makes surgery suck: pain, numbness, drains and weird-looking boobs. Plenty of women mention how much drains suck and they are not wrong. It’s weird to have them hanging out of your body plus you get the joy of cleaning those suckers out.

The other thing other women have mentioned is the numbness you’ll feel. It’s different for everyone but in addition to being numb in the chest region, I was also numb in my armpits and the backs of my arms (triceps area).

I figured going into surgery that as good as plastic surgery can be, it’s not going to be as good as the real thing. I also didn’t anticipate how long shit takes to get back to looking somewhat normal. I did have the added surprise of the girls not being even since my surgeon thought I’d be getting radiation.

After waiting a couple of weeks for my pathology, the good news is that I don’t need to have radiation since I had a pathologic complete response (pCR) to the chemo. This means that the there was no evidence of residual disease which is freaking awesome. The chemo as brutal as it was, did the trick.

Of course, there’s the bad news, with uneven boobs, it means I’ll definitely have to have another surgery.

Yup, sonofabitch….put one in the win column and it has to be followed up with putting one in the what the fack column. Although the prospect of another surgery is daunting, I do feel a sense of relief that chemo did as good a job as it did. It doesn’t take away the paranoia that maybe some rogue cell was missed.

But, I let myself think about it a little and then move on. Otherwise, I’d spend all my time freaking the hell out. Besides, I still got 10 more Herceptin treatments to go. I also have to get back to not moving my arms like a puppet.