Saturday, 27 August 2011

Appointment Finale

This week was a BIG week for me! Tuesday marked my last pre-op appointment with the surgeons, and things are starting to feel like they are falling into place and finally under control.

I have made the decision to go ahead with a preventative mastectomy + alloderm reconstruction to battle my BRCA 1 gene (just one of my many genetic failures), but the road to get here has not been an easy one. In order for me to move forward with this process I have had to meet with 3 surgeons, my cardiologist, my pacemaker team, a genetic specialist, 2 oncologists, a research coordinator, as well as go through screening. It has been EXCESSIVE! I have been averaging at least one appointment  a week, and it has felt like I have been spending a lot of time at Princess Maragret lately.

This final appointment was with the surgeon who will be performing the mastectomy portion of the procedure. Typically the surgery involves two surgeons; one surgeon who performs the mastectmony and a plastic surgeon who does the reconstruction. In my case surgery will have the added SPARKLE of a cardiothoracic surgeon who will remove my pacemaker to begin the festivies and then re-insert it to cap off this OR party.

The last 2 surgeons I met with could easily be described as OR Mavericks. They were up for the challenge and clearly a little giddy about the research my surgery is sure to generate. You could see them working out the introductions to their research papers 5 minutes into out inital meeting. Dr. McCreedy, however, was a little more tentative about the whole affair. As I walked him through the info I had from my MANY other appointments and my sorted medical history he did not appear as enthusiastic as the my other surgeons had. In fact he looked concerned - not a look you want to see as a patient.

He stopped me mid-sentence as we were discussing the placement of my ICD in relation to my breast and said, "Krysten given all the complicating factors here, are you sure you really want to do this NOW?" . This statement definitely gave me pause. I sat there staring at my surgeon, one of the most highly recommended professionals in Canada, and I began to think that perhaps my reasoning was NOT sound. Maybe all the thoughts I had made sense for women without all my added complexities. So I posed this questions to him, "If I wait, if I just do screening, and I end up back here in 10-15 years with a Breast Cancer diagnosis - how much more complicated is this then?" .

"Very" was his response, and with that we were on the same page. I am making this choice now when the choice is mine to make. When things are only mildly complicated, instead of "very". And while this fight only involves surgery, without the added battle with chemo and radiation.

Now we  just wait for a surgery date!

Love your favourite Darwinian Fail,

Monday, 22 August 2011

My Setback Has Made Me a Slacker

CONFESSION TIME: I have been a SLACKER for the last 2 weeks!

My Swollen Ankle!
I mentioned my sprained ankle in my last post, and my injury has been a catalyse for my stalled progress. My injury was definitely a result of overuse and over-training. The doctors said I had a small stress fracture in my foot and because I was over compensating for this injury I had also sprained my ankle. UGH!!

I had been feeling a little burnt out lately, admittedly. Things have been hectic and a little high stress. I am in the process of finalizing my classes for the summer semester before my long awaited break. I am planning on putting my classes on hold while I go through the final stages of my surgery prep and the surgery itself. I have also been working full-time, with more overtime than usual. Balancing the commitments of family and friends with my half marathon training schedule, and attempting to not become a complete hermit clearly took its toll.

I was depressed that my lofty half marathon goal had to be pushed back, but I think that this break was necessary. I was on crutches for a week, hobbling around rather hopelessly for another week, and now slowly normalizing. Needless to say there has been no exercising to report, and I have also been more than a little slack with my diet. I definitely feel a little pang of guilt, but ready to get back on the healthy lifestyle bandwagon. I am hitting the pool tomorrow to implement my new training regime, sometimes a break is exactly what you need both mentally and physically. Its all about the balance!

I will keep you posted!
Love Your Favourite Darwinian Fail,

Thursday, 11 August 2011

I am not a Robot!

Definitely been my theme song lately, and I like to think it was quite possibly written for me. Because while I am literally part Robot (or cyborg as I prefer), and on my way to adding *ahem* more artifical parts I AM NOT A ROBOT!

This week has been tough, I have sprained my left ankle (pretty badly) putting an end to my dream of running my half marathon this October. I am currently on crutches for the next few weeks, with the added consequence of NO RUNNING for at least 6 weeks!! Ugh it feels like torture, and just a few days has felt like an eternity. I have been really frustrated, but I am in the process of re-thinking this goal, and just revamping the timeline for the spring.

There is more to me than this, and this is not a sum of myself or my life. I have already beat heart disease and once I beat breast cancer I plan to get back into fighting shape with running. I am going to kick my genetics butt completely by running my half marathon in May. Where there is no struggle, there is no strength.


Love your favourite Darwinian Fail,

Tuesday, 9 August 2011

Thoughts Behind Totally Toasting the Ta-tas

Okay so first of all lets take a moment to enjoy the fabulous alliteration I created in my title. (*pause* Can you tell my first degree was in English!? It had to be good for something, right?)

Since I started my blog and have come clean about my latest and greatest adventure as a Darwinian Failure, the question I get most often is "WHY?". Why get a preventative mastectomy? What drove you to this extreme conclusion? So I am hoping this post will help explain it all...

I want to start off by saying that as much as I make light of the situation in my posts it was by no means an easy decision. And it was also a very personal one at that, so while this works for me I realize it wouldn't for a lot of other people. I recognize that this is not the decision most women would be comfortable making, and there is certainly a part of myself that is extremely sad to be in the position where I had to make a decision either way. However, that being said "thems the breaks kids" and the What-If Game gets us no where. Now that I have all the information I have, a decision must be made, and the preventative mastectomy + reconstruction had always made sense to me.

My prior experience with Long QT Syndrome definitely played a HUGE role in my decision. I think when you are young and healthy it is really easy to feel a little untouchable. We are bombarded everyday with stats about the role of our genetics and lifestyle, but unless you have landed on the wrong side of those numbers it is easier to pretend that those numbers don't apply to you. So when you hear odds like a 40-70% risk of cancer it is easy to tell yourself that you will end up falling in the 30-60% that will NOT be affected. But my experience is that I am ALWAYS affected.

I have not had the best of luck with the numbers game in the past. My cardiologists always says I am one in a million - and this is not because my sparkling personality dazzles him at each appointment. This is because everything that could go wrong probably has at some point. My condition is very rare to begin with, rarer still is that there is no family history of Long QT despite other family members carrying the gene. Along with being the only family member to have an active case of Long QT syndrome, I also have the added privilege of being highly allergic to all the medications used to treat it (hence the whole pacemaker thing). Then there have been all the other little flubs along the way; broken wires, blood clots, improper device programming, etc. the list goes on really. The old saying "whatever doesn't kill you makes you stronger" is definitely true, but these things sure can be ANNOYING.

Lately, things have been on the up and up, which has been a nice change of pace (ba-dum-bum a little pacemaker joke there for you). But I am very aware of what it is like for them not to be. All the experiences I listed above took place during a span between my final year of high school and throughout my 4 years in undergrad. So despite those many unfortunate experiences life goes on and you have to go with it. Life doesn't wait for you to get better, classes go on without you, holidays come and go, and the sun rises in the morning and sets in the evening. But for you things have to be put on hold or pushed back, because the other old adage that has always proved true for me is that "without your health you have nothing". Being all too aware of the consequences of bodily ills has made me hyper vigilant about my health, and has caused me to take a proactive approach whenever possible, thus making a preventative mastectomy done on my own terms look rather appealing.

The other conundrum I had to face are the limits and complications of Breast Cancer screening options with a Pacemaker. Having a pacemaker (ICD) means that there is kind of a rather large metal box in my left breast. I always tell people its approx. the size of your blackberry. This means I can never have an MRI and with all other screening options there will always be part of my breast that is obstructed from view. It is also possible that my ICD could be broken during screening. Not ideal, because whenever maintenance is required so is surgery. This is obviously something I would like to avoid, because although my record for surgeries has not been stellar so far (I am averaging about 1 every 2 years at this point) I am hopeful it will improve with time.

The final issue I have with screening is that it is very likely that one day I will go in for my regular scheduled screening and that will be the day that they tell me I do in fact have cancer. So in the end I will just have to do all of this anyways + chemo + radiation. I think anyone who has ever seen someone go through these treatments knows they are not pleasant, and I have decided that these are things that I want to avoid, and a preventative mastectomy is the very best option I have to ensure I don`t have to fight that fight.

So that friends is the long and short of it.No Boobs = No Cancer. This treatment is 90% effective, and that is a number I can get behind.

Love your favourite Darwinian Fail,

Wednesday, 3 August 2011

Because I am wrong in all the RIGHT ways...

I woke up extra early this morning and hit a 6:30 AM spin class. This morning was rainy and dreary, and it was looking about as cheery as I felt. I had an early appointment scheduled to meet with my plastic surgeon to OFFICALLY sign the paperwork to toast the titties, so I knew a little endorphine kick would probably go a long way today.

I was RIGHT! Not only did it feel good to give my body a good butt-kick and take out a little frustration first thing in the AM, but the class ended with Pink's "Raise Your Glass". As I was spinning my heart out (probably literally ba-dum-bum) her lyrics "So raise your glass if you are wrong in all the right ways, all my Underdogs" felt like it was written for me. It is definitely today's official theme song.

Today as I sat in my thin, little, blue hospital gown getting my boobs measured for implants and going over the nitty-gitty details of my upcoming mastectomy, and deciding how we are going to accomplish all these things while also accomodating my already existing pacemaker - I thought about how easy it would be to get wrapped up in all the ways my body is wrong. It would be so easy to think negatively about my genetics and this whole situation. But for all the ways I am WRONG these experiences have helped make me...ME. And the me that is RIGHT is able to see that. So as I signed away my breasts, and signed up for a bilateral mastectomy with an alloderm reconstruction I raised my glass for being wrong in all the right ways, and walked out with a smile.

Love your favourite Darwinian Fail,