Seriously?

        Welcome to Alexander Family Cancer Blog: Episode 3! Although, technically, it should be episode 5, but since we didn't do one for mom's breast cancer in 2009, or her breast cancer in 1999 (was blogging even a thing back then?), we'll just have this be episode 3. Spoiler alert: this is a long post...bless you if you actually make it through my rambling until the end!

       Where to begin? Well, I guess I should take you back to early 2009, where this journey (sort of) began. My grandma Barb (mom's mom) had been diagnosed with and passed away from pancreatic cancer just over a year earlier, in November of 2007. As mom's second breast cancer diagnosis came about in 2009, this time on her right side, whereas her first battle (i.e.: defeat) with breast cancer was on her left. Given this recurrence, along with a long, long family history of cancer on her side (I'm talking 11 different family members within 3 generations) she petitioned for screening of the BRCA Gene (BR-breast/CA-cancer) mutation. Ding! Ding! Ding! THIS IS THE KEY TO EVERYTHING! 

So. Here's the important information about this genetic mutation:
      1. Everyone has this genetic sequence--both males and females--but the mutation of the gene is what is alarming
      2. A "normal" female (without the BRCA gene mutation) has roughly a 7-12% chance of developing breast cancer over the course of her lifetime. Comparatively, a woman with the BRCA gene mutation has up to an 87% chance of developing breast cancer over the course of her lifetime.
    3. The BRCA gene mutation is also aligned with ovarian cancer--up to a 44% chance of developing it compared to less than 2% chance for those without the gene mutation.
   
The process to get tested for this gene mutation is super intense. First, you have to have documentation of proof that there is a reason to believe you have it (i.e.: family history). Secondly, you have to go through genetic counseling and be declared mentally competent by a psychiatrist or genetic counselor to handle the results. Lastly, it is expensive as hell. I think this last part has changed since 2009, but at the time, it cost at least a few thousand dollars to go through this process. Anyway...

 Mom went through this process and (unsurprisingly) was found to have a BRCA-1 mutation. (There is a BRCA-1 and BRCA-2. You can have one, both, or neither. BRCA-1 is traditionally the more "intense" one, though). What does that mean for me and Layne?! Well, it meant that we each had a 50% chance of inheriting this gene mutation. We could both have it; neither of us could have it. Of course, once mom got her results, I instantly asked when I could get my test done! Layne, on the other hand, didn't feel the need to rush to get it taken. Mom told me I could get it in a few years--my results would be the same then as they would have been at the time, but being the control freak I am, I pushed and pushed to get it done. Sure, I was 18 and technically could have gotten it done on my own, but insurance doesn't cover it and I sure as hell didn't have a few grand laying around to spend on it. Instead, I just accepted a few simple (though unproven at the time) facts, and went on to to live my life:
     1. I have this gene mutation
    2. I will develop breast cancer at some point (probably in my 40's, just like mom!)
     3. Once I am done having kids, I will get a mastectomy and hysterectomy/oopherectomy and reduce my chances of getting cancer to 0!

By coming to terms with this at 18, it was easy for me to learn at 21 that I did, in fact, have the BRCA-1 mutation (Mom finally paid for me to get tested after Dad was diagnosed with lung cancer--obviously the mutation had nothing to do with lung cancer, but she knew she could no longer shoot down my requests!) and continued to accept the fact that I was going to get cancer at some point: it's just a matter of time. And now: a timeline!

Fast forward to 2010: Mom has been determined to be cancer free (yay!), has had a double mastectomy and reconstruction and loving her new boobs (yay!), and has had a hysterectomy and oophorectomy (no more cancer, AND I get to stay the baby of the family forever! yay!). All is right in the world!

Fast forward to 2012: Dad has been diagnosed with lung cancer (boo!). He is no longer able to be a pilot, but gets to work on his already amazing golf game multiple times a week, and is not in pain while going through treatment (yay!)

Fast forward to 2013: Dad goes downhill quickly and passes away June 1, just 3 weeks after I graduated from college :( #stillheartbroken

The rest of 2013-2015: I (and everyone else) still miss dad every single day. Mom and I become just as close as dad and I used to be #bestfriends

February 2016: Mom becomes diagnosed with Stage 4 Pancreatic Cancer. Within the years since her testing for the BRCA gene mutation, a stronger link between individuals with BRCA 1 or 2 and Pancreatic cancer has been found.

April 2016: Mom goes downhill quickly and passes away April 5, just 9 days before Baby James is born :( I decide to finally let myself have the space and time to fully grieve the loss of both of my parents, and instead of returning to teaching in the fall (aka: July--wtf, Chandler?) I am going to go explore the world!

August 2016: I am traveling the world! I have seen amazing things! Everyone is jealous of my Instagram! I find a lump in my boob while in Russia! Wait...what?!

YUP. Now, this isn't the first time this has happened. Before mom got her mastectomy, she made me feel her tumor so I would know what it was like/what to look for. So gross, BUT SO IMPORTANT!!!!! Hers was tiny--like the size of a BB pellet. This one I found (which I discovered doing my routine breast exams) was bigger--like the size of a small grape. I even made my best friend from my trip (Bek! I miss you!) feel it to make sure I wasn't going crazy. She assured me I wasn't--she felt it too! I made a note to keep an eye on it because I sure as hell wasn't going to go see a doctor in Russia.

September 2016: Lump is still there! It's getting bigger! You can now see it protruding out of the bottom of my breast! Layne yells at me over FaceTime to go to a doctor STAT! I don't, because "um hello I'm going to a new country like every other day and I'm exploring and having fun and I'm totally fine and I promise I'll go as soon as I have a chance to see an English speaking doctor, sis!"

October 2016: I FINALLY go to a hospital in Budapest, Hungary to get it looked at, because it is now disgusting to look at and becoming painful. I get to an English speaking hospital, (sidenote: hospitals in Hungary look like 1950's mental asylums. Just saying!) and the nice doctor does an ultrasound to check it out. I explain to him my family history and BRCA-1 mutation which are fueling my concerns, as well as the fact that this hasn't gone away yet and instead is getting worse. Within seconds of beginning the ultrasound, he assures me it is benign (not cancerous). YAY! He explained to me that there were clear margins (lines) of the tumor, and little to no fluid surrounding it, leading him to believe it was just a complicated cyst--easy enough to drain, but suggested I waited until I got back to America to do so because the cyst itself had some blood or other matter in it. Therefore, "SEE, LAYNE, HE SAID I'M FINE! I'll get it double checked when I go in for my yearly check-up with my ob/gyn in November"

November 15-27, 2016: I go my ob/gyn appointment, and she tells me I need to get a breast MRI. I call to schedule it and they can't get me in for 2 weeks. Annoying, but the other doctor told me it was benign, so I don't worry! Layne and Aaron, on the other hand, are worried. Layne ends up taking me in to the ER that they work at because she wanted quick answers instead of waiting another week to get the scan...and then another week to get the results...and then another week for whatever follow up appointment is needed...blah blah blah. So I get checked in, they examine me, and instantly she tells me that this is now surgical--it is way past the point of draining it with a needle and syringe (its also rock hard). I get another ultrasound done, and within the last month since I had had it checked in Hungary, it had doubled in size, and the margins are no longer clean.
The radiologist determines it is bi-RADS 4, meaning there is serious cause for concern that this is cancerous. However, because all of my labs came back normal, they decided I didn't have to stay overnight, and pulled some strings to get me in with Dr. Edgar Hernandez the very next day. Woah, big deal alert! He is THEE breast surgeon to go to and I quickly learned why for myself!

November 28 (Monday): Layne and I go and see Dr. Hernandez, and he is very concerned while doing my examination. He drains fluid from the area surrounding my lump, because now it is essentially enclosed around a huge fluid-filled sac that is taking up about 70% of my breast. He said "if the fluid that comes out is pus-like, then we will know that this is an abcess/infection, but if it is blood, then it is concerning." So then he grabs a huge ass needle and syringe and proceeds to drain 60cc (about 1/4 cup) of blood out. Um..ew. Also, OF COURSE its blood because these types of things have hardly worked out in our favor in the past. So. He tells us that he is pretty sure it is a cancerous mass, and wants to see me back on Friday to see if the draining has helped at all, but is doubtful it will be.
He recommends that I highly consider getting a double mastectomy and reconstruction so that we can get this thing taken care of and I won't have to worry about breast cancer ever again! Since this was already in my plan at some point, it wasn't that big deal for me.

December  2 (Friday):
All of the fluid that he had drained had returned, and then some. After more examination, he says he now is confident that the mass is a cancerous tumor, and due to the severity of it (and the change even just from Monday to Friday), he will have to surgically remove it and gets me on his schedule for first thing the following Monday. He also tells us that he now believes that this is a specific type of breast cancer known as triple-negative breast cancer (more on that in a bit) and that I will have to have chemo and probably radiation. UGH.

December 5 (Monday): Early morning surgery! I am insanely nervous, because the last time I had a "simple procedure" to remove a bone spur from my heel, I wake up from anesthesia to the nurse telling me "ohhhh, we had a little complication and had to completely sever your achilles." WTF. However, I knew I was in good hands. I wake up from anesthesia, and everything went well (yay!) and they let Layne come back to post-op (cause she is special, obviously) to see me, even though family usually isn't allowed back there. She tells me that they did the biopsy and confirmed that the lump is, in fact, cancerous. I would be seeing the oncologist later in the afternoon, and would have more surgery the next day to get a port put in (more on that later). I was sad when she told me all of this, but not because I was being told I had cancer (I already knew I would get it at some point, remember? Just didn't think it would be when I was 25), but rather because all I wanted was to 1) have my parents here with me and 2) have Layne be able to pregnant and worry only about herself and her baby--not about having to take care of anyone else! After about 5 minutes, I sucked it up and was ready to go home (and by go home, I really mean get McDonalds).

Later in the afternoon, we went over to Ironwood Cancer Center and met with my oncologist, Dr. Kalmadi. He, like Dr. Hernandez, is the best of the best. I was very impressed with him and his staff, and they explained to me what the coming weeks and months would look like. I let him know that my biggest fear with going through chemo is that it would send me in to menopause, as it did to mom at 41, and while I have 0 desire to be pregnant and have a baby right now, I know that it is something I absolutely want in the future. He assured me that it would be okay--he would set me up with a fertility specialist, and I would go on a drug called Zoladex while undergoing treatment to protect my ovaries. Once he told me this, I gave a deep sigh of relief and was ready to take down this mother fucking cancer.

December 6-9: Tests, tests, tests, tests, and oh, MORE TESTS. I have been poked and prodded more in this last week than I ever thought possible, and yet I know it is just the beginning! On Tuesday, I had my Port-a-catheter (aka a "port") put in, which is a device put under the skin on the chest just under the collarbone that connects to the veins that lead to my heart. Aka, it is like a permanent IV. This is used with most cancer patients to help "save" their veins, since so much medication will be coming through. I'll have it surgically removed once I'm all done with treatment! The other biggest part of the week was meeting with my fertility doctor, Dr. Millie Behera. Again, the best of the best. I want to be her. She is amazing! We discussed my options and I was certain that I wanted to freeze some of my eggs before starting chemo, so that just in case it destroys my ovaries, I still have the opportunity to have my own children one day. Let me just say, I have SO much respect for anyone who has gone through fertility treatments. It is hardcore. I began mine that night--strictly detailed calendar to adhere to multiple medicines (both pill and shot forms) for the next 12 days to help my eggs develop before they can harvest them. Yikes! Future children, hope you are as cute as baby James! ;)

December 12 (Monday): After receiving the results from all of my tests and scans from last week, I met with Dr. Kalmadi today and he confirmed that I do have triple-negative breast cancer, meaning the tumor lacks the three types of hormone receptors. While this is an aggressive form, it is receptive to chemo, and my oncologist is positive I am going to beat this! (Like there was ever any doubt, right?) So. I will begin chemo on December 22. I will have Adriamycin and Cytoxan every 2 weeks for 4 sessions (8 weeks total), and then Taxol once a week for 12 weeks. THAT MEANS: I will finish chemo in April, have my double mastectomy and reconstruction in May, and have radiation for 8 weeks in June and July.

I know that when I posted my status the other night, the majority of you reading it probably looked like this:

Yes, seriously. So even though it may seem like the world is unfair (which it sometimes is) and this is such a shock, I really am doing okay--I've been waiting for this for about 7 years. Even though I am going to lose my hair, and my boobs....I'm going to get some awesome wigs and look like a badass until my real hair grows back, and then I'm going to get new boobs and be hot forever! Win-win, right? 

I cannot thank you all enough for the genuine outpour of love and support I have received these last few days. Whether you are a friend of mine, Layne's, or my parents, please know that I am so grateful for everything you have done for me (and us) so far. The gofundme page that was set up by one of my sorority sisters was the last thing I would have ever expected and never would have done by myself, and I hope you know that any size contribution has been (and will continue to be) so helpful. Those of you who have known me for a long time know that I'm not one who likes to be in the spotlight or with all of the attention on her (except for when I'm teaching, right, my wonderful students?! ;)) and I apologize in advance for being awkward about having so much of it on me right now.
     
Please know that I love you all, and I am SO sorry if you died of boredom reading this. The rest won't be as long...

xoxo,
Kristen