breast cancer

First Opinion

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2013-08-18 17.24.19

Well, the waiting was finally over. On November 22, 2013, I finally had my first appointment at Dana-Farber.

It wasn’t easy getting that appointment. It required a myriad of calls to insurance companies, the nurse manager at the health clinic, and Dana-Farber.

I wasn’t really sure what to expect. I knew I’d be meeting with the breast surgeon and the oncologist. I figured it’d be a couple of hours. I would learn exactly what was going on. The appointment was more of a whirlwind of meeting including the surgeon, oncologist, nurses, research coordinator, and genetic counselor. I learned a plethora of information but no real particulars since the pathology on my biopsy samples were not complete and genetic testing was needed to determine treatment.

Before the appointment, still in some denial, I was in the hoping for the best mode. I figured I would definitely have to have a lumpectomy and maybe, some radiation. It came as a shock to me that my tumor was considered too large to be removed via lumpectomy.

Instead, choice #1 was to start with chemo to see if the tumor shrinks enough for a lumpectomy, if not, mastectomy it is followed by radiation and lastly, hormone therapy. Choice #2 was to start with a mastectomy, then chemo followed by radiation and top it off with hormone therapy.

I wouldn’t know about the exact type of chemo until the pathology of my biopsy sample and the BRCA 1, BRCA2 genetic testing were complete. The genetic testing was an extra fun waiting game added on. If the test is positive, your risk for cancer in the other, unaffected breast goes way up along with your risk for ovarian cancer. It means that you have to make a decision on whether to do a bilateral mastectomy, followed by another whooper of a decision on whether to have an oophorectomy before you turn 40. Talk about a shit sandwich.

So after an incredibly long appointment, you just realize how much getting cancer sucks. It’s great that we live in a world and a country in which you have options. This is great because you get to do the whole staying alive bit.

But, you soon realize cancer treatment is really a matter of choosing the least shitty option. Because your life and your body as you knew it is not going to be the same. Neither are you.

I decided to go the chemo first route. I figured it would be nice to see if lumpectomy could still be an option.

So, I would have to wait, you got it, another two weeks. At the end of the two weeks, I would have to do the scans and tests to make sure the cancer hasn’t spread past my lymph nodes. The day after those tests I would find out the results of the genetic test and what type of chemo I would be getting.

In the meantime, because chemo does a number on your ovaries and I haven’t had children yet. The next step is meeting with a infertility specialist. Hooray for more appointments.

“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.

Waiting in Line

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2013-09-15 14.51.23

You would think after being diagnosed with breast cancer. You would be immediately thrown into a whirlwind of appointments. Maybe picture a super-dramatic meeting with a doctor whose awe-inspiring words include “we’re going to save your life damn it.” You know something like the spanish telenovelas I grew up watching. Noppppe. That didn’t happen in my case at all.

Instead, I felt like I was waiting in a two week line for a kiddie roller coaster. A long line for a ride you don’t want to be on.

Even though, at that point, I knew I had breast cancer. I had no other information. I didn’t know what stage or how bad it was. I tried to refrain from using the information trove of the Internet. I figured the only thing it was going to do was scare the shit out of me. It’s usually you have a cold or cancer. Since I already had cancer, I figured the only other thing I’d found out is that I’m dead. Sooo yeah, I didn’t want to spend two weeks shitting a brick.

What I found interesting is that in those two weeks, despite not knowing what’s going on or having any treatment underway, it was easy to fall back into a false sense of what life before cancer was like.

Even in those two weeks, the time I had to spend telling people I had cancer; for the folks I did tell, I felt like I was dissociating myself from the self that has cancer. It’s difficult telling anyone you have cancer. It makes it more real. It bums the other person out. It also feels like hey, everyone, look at me. I want attention; I have cancer. Followed by the holy crap, I have cancer. What the hell. I can’t believe this. It’s a merry-go-round of the stages of grief.

As much as not knowing or being in treatment isn’t great, those two weeks didn’t suck as much as they could have. The seemingly endless doctor appointments, tests and scans were about to start.

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.