Choose Your Own Breast-venture!

I would like to start this entry by simply stating that I am exhausted. I realize that cancer-related fatigue is a really genuine symptom of cancer, but honestly this seems ridiculous. Most people seem to be affected by their treatments, and I haven’t even gotten to the bulk of those yet. All that’s happened to me is a few scans, some minor breast mashing, and being turned into a human pincushion.  On a side note, please stop taking my blood. You’re all testing for the same things, why do I need to give so much? Between work, the parade of doctors, and just dealing with life in general, I am drained from everything.  Talking to a very smart and medically intelligent friend of mine (Hi, Splash!), she made an excellent argument as to why. In her words, since cancer cells are constantly dividing, it’s taking up energy from your body that you haven’t had to spend in normal life. It all makes good sense to me, but it still sucks.

So aside from my tiredness induced whining, I did get some awesome news this week. My BRAC testing came back and it is negative!!! So I don’t have the gene mutation that would make me incredibly susceptible to breast or ovarian cancer in the future. This is just really awesome and I’m so thankful that my family now doesn’t have to worry about this being a part of our genetic makeup forever! I know, it’s possible that my brothers may still be carriers but it’s much less likely since I don’t have it. So yay for good genes, but boo for making really hard decisions.

Knowing now that I have multiple options for surgery is just a huge stress factor for me. Anyone who has ever asked me, “What do you want for dinner?” knows how much I hate making decisions. I never like to close doors and I hate living in absolutes of my own doing. I have no clue what I want to eat yet, but I can assure you I’m not in the mood for Mexican or Chinese food.  I found a wonderful quote recently to describe this thought process:

“I am almost never sure about what I want, but I am always sure about what I don’t want.”

Just a reminder: I have been currently weighing my options between a lumpectomy and a bilateral mastectomy. I did have the option of a single mastectomy but if I’m taking one, the other might as well go too. I have been toiling over this decision since I was told that both are really good options for my situation and, my god, this is a tough choice. I have talked to doctors, breast cancer survivors, my family, Kris (I keep telling him it’s more important to him than to me since he has to look at my chest). I’ve even made a pros and cons list for both surgeries. As I told my dad last night, this is the worst choose your own adventure of all time.

The more I look at these options, it seems to boil down to one choice: Am I willing to give up two of my favorite parts of my body to almost eliminate the chance of having cancer again? I want to want the lumpectomy because I love my breasts! I could write an entire post on how awesome they are and the many many MANY good times I’ve had with them. Even my plastic surgeon told me they are perfect for crying out loud! They are a large part of my confidence, my femininity, and a part of who I am today. Even with all of those thoughts, I just can’t imagine having to go through this whole ordeal again.

Because of my age, the chance of me getting cancer again in my lifetime is incredibly high. By having the mastectomy I am able to reduce that risk by 96%. As much as I love my breasts, I love my life more. I am to the point that anything I can do to prevent going through this whole ordeal again I am willing to do. So between my doctor’s recommendations and a lot of deliberation I have made the decision.

January 3^rd, 2014, I will be having a bilateral mastectomy.

To be honest I am nervous and scared. It’s a huge procedure that is going to require a lot of recovery time. And most heartbreaking for me, I will be losing my most defining feature for good. I will be getting implants after the procedure, so that means fake boobs for me! From people I’ve talked to that have gone through the procedure before, it sounds pretty awful for the first few months, but the final product is just fine. Furthermore, you don’t even have to wear a bra to keep them up so woo-hoo to that! I will go into more detail later about what the actual procedure is, but making the decision was enough of a task for this day.

 Since this is a huge life event and not exactly fun news, please enjoy my first failed attempt at implants

I don't think Rory found this nearly as hilarious as Kris and I did.

Today’s quick recap:

*I’m super tired from everything.

*I’m having a bilateral mastectomy (that means everything is going).

“Your ovaries will be the size of an orange” and other fun facts

The title of this post is a direct quote from the very fun day at the fertility clinic. I will be letting you good people know all about that in just a bit, but before I do, I feel like I need to address a very common question that keeps coming up.

“So what’s next?”

Simple question, difficult answer.

One of the more fortunate things about having breast cancer, as opposed to other forms of cancer, is that treatment is on a linear plan. First you get the surgery, then chemo, radiation, and hormone therapy.  Depending on the type of cancer you have, you might not need chemo, you might not need radiation, and you might not need hormone therapy. From what I understand (keep in mind I am medically unprofessional), surgery seems to be a sure thing for breast cancer patients. It’s a streamlined process and every doctor I’ve spoken to about it is confident with it. The main holdup in my treatment options are coming from the first step of this adventure.

With breast cancer there are a few different surgeries available. You can have a lumpectomy, a single mastectomy or double mastectomy. There are different types of mastectomies but I’ll leave that alone for now. A lumpectomy, the least complicated of the procedures, consists of having the cancerous tumor, some of the surrounding tissue, and the axillary lymph nodes removed. (Those lymph nodes are up near your armpit and are tested for cancerous cells. As Kris beautifully explains, “Your lymph nodes are part of your body’s circulatory interstate.” If cancer cells are present, there is a very high chance of it spreading to the rest of your body, also known as metastasizing). The lumpectomy is an outpatient procedure and has a much shorter recovery time than the other surgeries. A mastectomy is a much more involved procedure that involves removing all of the breast tissue in either 1 (single) or 2 (double or bilateral) breasts. It is an intense procedure that will have you in the hospital for a few nights and a recovery time of a month or longer.

For my current diagnosis, my medical staff is saying they fully support doing either a lumpectomy or a bilateral (double) mastectomy. If you haven’t fallen asleep between paragraphs you might be thinking “Gee, those seem like two really different options. How can that be possible?” Well, there are a lot of factors that go into deciding the course of treatment and, without going into everything, a lot of it has to do with future risk factors and reoccurrence. Apparently, my wonderfully young age (I realize the irony of this to some of you but 28 is really young to have cancer) means I have a much greater risk of having breast cancer again at some point in my life. There are many benefits and drawbacks to each procedure, and it is a decision that has been causing an obscene amount of stress every time I try to think about it. I’m currently working on making a list of pros and cons for each to see if I’m unknowingly leaning towards one option over another but honestly they both just scare the shit out of me.

There is one factor that I’m still waiting to find out about that might help make a final decision on the matter. A little over a week ago I had blood sent out for genetic testing, more specifically it is looking for a mutation in the BRCA 2 gene (pronounced brack-a, at least I think, sine that’s what I’ve been hearing/using and no one’s corrected me…so far). If that mutation is present, then my chance for having cancer again becomes so high that every doctor I have spoken to recommends the bilateral mastectomy; no argument here. Because I was so young when cancer presented itself and I have a family history of breast and cervical cancer, my doctors feel there is a chance I have this mutation in my blood. The test should be coming back by a week from Monday (the 16^th if you’re tracking me with a calendar) and as soon as results are back, I will be scheduling surgery.

Whatever happens with surgery, my oncologist has informed me that I will be going through chemotherapy. This has been one of the harder pills to swallow in this whole process. I have talked to quite a few women who have gone through surgery and radiation, but none yet who had gone through chemo. I have been put in touch with some people through an awesome program in Portland called “breast friends” so I’m hoping to have that opportunity sometime in this next week. It sounds crazy but I feel like I’m having a harder time wrapping my head around losing my hair than the possibility of losing my breasts. And it’s not just the hair on your head, but eyebrows and eye lashes can fall out as well. If that happens, all I have to say is I better be losing my leg hair as well. If my eyelashes are gone but I still have to shave my legs, I’m going to be PISSED! I’m going to cut my hair shorter sometime in the next week (I think I’m going to go somewhere between my chin and my ears) and then within the next month cut it into some sort of pixie cut. As weird and crappy as it will be, at least hair will eventually grow back.

Chemotherapy, as I am learning, is not there to kill the tumor, but to take care of all the cancer and pre-cancer cells that are anywhere in the body. Chemo works by targeting dividing cells (cancer are cells dividing out of control), and destroying the actively dividing cells. It makes people nauseous because it destroys the cells in your G.I. tract (they turn over very frequently). It destroys hair cells because your hair is constantly growing. The largest concern out of this is that the chemo also targets the ovaries and can deplete the supply of eggs within. Depleted egg supply can lead to issues with fertility and could even put me into a state of early menopause (which happens to some women but not all).

It is with this knowledge in mind that I was sent on an interesting trip to Portland to meet with a fertility specialist. As someone who has spent most of her adult life speaking up for women’s reproductive rights, this was a very interesting experience. I wasn’t quite sure what to expect out of all of this. I had some idea that people could get their eggs harvested and then implanted later and the miracle of life could all happen in a petri dish. My concept of this whole process was pretty much “Jurassic park, but with humans!” Here’s what really goes down in this wild practice:

To have your eggs harvested, the process starts a few days into your period. There is an estrogen cocktail that must be injected twice a day. It is a device that looks like an epi-pen, and you have to inject it into your abdomen (I asked, there is bruising that will occur). Every other day, you come in for an ultrasound to check and see how the eggs are growing. The elevated level of hormones in your body makes it so instead of one egg fully growing, anywhere from 10 to 20 eggs in each ovary grow to full size. This process of injections and ultrasounds goes on for just under 2 weeks. At the end of this time, with all of the eggs fully grown, each of your ovaries will be the size an orange. AN ORANGE!!!! Obviously there is some bloating involved with that level of growth. After the eggs are fully grown, a minor surgery takes place to harvest them. A small needle on the end of an ultrasound probe is used and they remove the eggs. From there either just the eggs are frozen or, if you have a partner, you can take a semen sample, combine the two, and make an embryo. Embryos statistically have a higher survival rate (they’re multi-celled instead of an egg which is just a single cell) and a lot of people choose to do a mix of embryos and eggs.

I will be completely honest here, this process is terrifying and this whole thing pisses me off a little. I don’t know if I ever want to even have kids, and while Kris and I have talked about our future, I feel like we’re being forced to look so much further than either one of us wanted to right now. We are both secure in our relationship, but we’re not married right now, and we’re not even engaged. Honestly it’s just unreasonable that on top of all of this cancer bullshit, we have to also try and plan a huge component of our future. We don’t know if we will even want children in the future but we both like the idea of having it as an option for later in our lives. This has massive potential outcomes on the rest of our lives and it just makes me a little angry. Oh and the cost of all of this is insane. It would be about $8,000 for the whole thing. It just seems to me that spending that amount of money on the chance that something might happen, and not yet knowing if I even want to have kids later, does not make sense.

There are other drugs that I can be put on while going through chemo to lessen the impact on my ovaries during the process. I also feel like great advancements are being made every year with in-vitro fertilization, and by the time we would be ready to have a child, who knows what would be possible? There’s also the fact that the hormone injections I would need to harvest the eggs would be the exact opposite of good for my tumor. My particular kind of breast cancer is reactive to estrogen and the incredibly high level of it coursing through my body to grow eggs is good for growing cancer too. Kris and I have discussed this and we both feel like opting for the drugs during chemo instead of going through what sounds like a hellish process just for extra insurance is going to suffice.

The day was really informative and ended up being pretty fun. Through this process thus far I have realized that my parents know entirely too much about my reproductive system and my relationship with Kris. My dad could not wrap his head around the storage process of the frozen eggs. He was convinced that someone was going to steal my genetic material and sell it overseas. In his words, “They steal bank accounts every day, how do I know your eggs aren’t ending up in a research lab in Asia?” We were able to meet up with my brother, Moses, and his lovely girlfriend, Alyssa, for lunch where far too many jokes about eating eggs were made. It was nice to see them and hopefully I can do it again before Christmas or surgery, whichever comes first.

Things are kind of calm for me right now. I have a much desired lull between doctor’s appointments this week while we wait for the BRCA testing to come back. I never thought I would be so excited to spend time at work;  pretending to be a completely normal employee for a little while makes me incredibly happy. That and I missed my kids. I know with chemo I can’t interact with kindergarteners as much, but for right now my immune system isn’t completely compromised and I love it.

I won’t have very much new information coming in over the next week. I’ve got a few smaller meetings after work, but I’m honestly just waiting on test results. Once again I really am so thankful to everyone out there who has given me their support and words of encouragement. It means the world to me knowing that I have such a large family of people out there and please know how much it helps me every day. You guys are the best!

Doctors, Nurses, and Paperwork: the trinity of cancer

As soon as the diagnosis sinks in and you have time to stop crying and catch your breath, an onslaught of medical professionals come beating down your door to take you under their wing. When people say you have a team of doctors, they are truly not joking. Within one week of diagnosis I had met with a surgeon, an oncologist, a radiologist, a gynecologist, a reconstructive surgeon and a slew of nurses and assistants. I have had my blood drawn, genes coded, an MRI, a mammogram, an ultra sound, my IUD removed, and a few new drug prescriptions.  Within the next week I will be also meeting with a fertility specialist, a nutritionist, a counselor, a peer advocate, some repeats of previously listed people, and, if I’m lucky, a hair stylist! More on the hair later…

Every single person has a lot of valuable information and I really do feel fortunate to have such a satiated network of brilliant helpful people, it can be just completely overwhelming and exhausting. Now as someone who doesn’t even have a primary care physician, I tend not to spend too much time in doctor’s offices, and it has been some minor culture shock (and before anyone freaks out unnecessarily, I have an OBGYN and that has been the extent of my medical needs for the past 5 years).  Most every appointment means missing at least half a day of work (a lot of times more), and I am considered a new patient at every doctor I go to see.  As a new patient, that means I get to fill out almost the same damn paper packet for every damn office I go to. It didn’t matter that my oncologist is LITERALLY ACROSS THE HALL from my surgeon; I had to fill out the SAME EFFING 10 PAGE PAPER PACKET!!!! Even though I have repeatedly answered the majority of questions that these monotonous behemoths have, it still takes upwards of 30 minutes for each one.  In context of other things I’m currently battling, not the biggest issue ever, but seriously there has got to be some way to streamline the process.

After paperwork mountain (I think it’s the antithesis of cupcake mountain), some friendly nurse will take me into a tiny room. This part usually makes me laugh since I haven’t been to a single appointment alone, and whoever is with me (usually my mom or dad) comes rushing up and seems as though they might tackle this poor nurse out of some fear that not walking fast enough will have them allocated to the waiting room while the doctors do god only knows to me. The nurse will take my vital signs, measure my height, my weight and my blood pressure (5’7.5”, 152, and 102 over 66, give or take). After that, the waiting game begins again, and another 20 minutes of my life gets devoted to Plants vs. Zombies 2.

Every doctor I have had has been awesome, and has also given me what seems like a lot of similar information. I’m going to give a quick break down by doctor, and since I have no idea if I’m allowed to use their names in a public forum, I’m going to just go by initials. If you want any more details, let me know and I can tell you more. I can honestly say I would recommend every one of my doctors to anyone in a similar situation to me. Anyway, here we go!

Dr. D, my surgeon extraordinaire! As the brains of the whole network, she is the one who referred me to my other doctors, set up appointments, and will be the first one to administer any kind of treatment. She was the first face I saw and it was honestly the best I could have hoped for in the situation. Everyone I have talked to that has gone through this and with Dr D has had nothing but good things to say about this woman. She was upfront and laid out a clear course of action. Not knowing anything about what was happening next it was really comforting have someone tell me, “You’re going to be okay, here’s what were going to do.” The details of the pathway are still a little hazy but she let me know what’s up.

Dr. T, my oncologist. She is a really nice lady, and she’s the one who will be in charge of chemotherapy and hormone replacement therapy. She is current and is up on the forefront of whatever information is coming out about breast cancer.

Dr. L, my reconstructive surgeon. He’s got the swankiest office and he wore a tie with dogs on it. If that’s not enough to sell you, he’s considered one of the top reconstructive breast surgeons in the northwest and after looking at his work I can see why. Even better, when talking with him about silicone implants, he showed me how durable they were by throwing one at a door. I like this guy.

Dr. W, my radiologist. He might be the smartest person I have ever talked to in my life. This guy is sharp as a tack but has the ability to explain things clearly. The fact that I might not need radiology actually bummed me out because that would mean not getting to talk to Dr. W again.

There is also K.W. who is my patient navigator. She is possibly the best thing the Salem Hospital has ever put together. K.W. is a registered nurse whose sole job is to help patients make connections and appointments with any doctor or professional a person with cancer might need. She’s also a two time cancer survivor and is beyond helpful. I do not understand how someone can get through this without having a patient navigator.

I’ve got a handful of other fine staff that are helping me out but these are the main people guiding me on my terrifying journey. Everyone is insanely supportive and I feel nothing but positive vibes about my upcoming fight. These people seem to have breast cancer down to such an elementary science, and speak with such confidence about everything going on; it leaves me feeling secure about my diagnosis. Even though I haven’t had surgery or chemo or anything yet, just the process of talking about it endlessly is a lot to process. The whole thing is still very bewildering and unbelievably exhausting, but at this point there are only two things about my current treatment that are bothering me:

1.       I still don’t have an absolute answer on what is going to happen to me in the next few months. I know I’m still waiting on tests to come back and I’ve got a pretty good idea, but I don’t have it 100% with dates set on everything and the uncertainty is wracking my brain.

2.       Medical appointments are currently reacting like a hydra: for every one you finish, 3 more spring forth from it. My appointment with the surgeon finished with an appointment in oncology, radiology, and plastic surgeon. My oncology one brought me two blood tests and an MRI. I realize this stuff is all very important but I have never been so excited for a full day of work in my life.

 Once again, for those too tired to read, here’s CANCER ABRIDGED (if you have a better name I’d love to know it)

*Doctor appointments are numerous and lengthy.

*My doctors are really cool and smart people.

*I’m doing just fine thank you (really I’m only freaking out about 10% of the time, pretty good if you ask me).

And I just want to say a quick thank you to everyone who has taken the time to read this or share this blog. When Simon and Chunk (Hi, friends!) told me they actually enjoyed reading it, I was touched and really appreciated the heartfelt words of encouragement. I feel really lucky to have such supportive family and friends. Even if I don’t get back to you right away, please know how much your love and caring words help give me hope and keep my spirits high during such difficult times.

Thank you all so much.