An Introduction of Sorts..

Part 1.   a/k/a   Page 1 a/k/a  Start Here

Hello. Let this be an introduction of sorts.  I'm writing this in advance of making this public (meaning this isn't "live").  Actually, it is April 27, 2014 which is today for me right now, but most likely isn't for you since your today surely differs from mine!   At some point our todays will line up because I'll be posting in some type of real time. Sort of.  That of course depends on me remembering to make it public.  Time will tell.. that is if it (time) could talk it will tell. Otherwise we're shit out of luck on that. 

Ok. Time to get down to business. This blog is about my voyage to having at risk (for cancer) organs removed - i.e. those pesky female parts that surgeons seem very eager to lop off. I guess with good reason (mostly).

Before I get into my history of why I am on the road to organ removal the reason I'm writing at this moment is because I have my surgical consultation tomorrow morning (April 28, 2014 at 11a.m.) at Columbia Presbyterian (actually it's Herbert Irving Pavilion 161 Fort Washington Ave (between 165^th & 168^th St) in NYC. Regardless of where it is, that's why I'm writing now.  Now I'm going back in time to the beginning of my journey and what put me on the road I'm now on. 

1962
Here's where it all began.  In July, my mom ejected me via C-section and I became a baby girl. I did the normal baby girl things like cry, pee, poo, cry more, sleep immediately. For all intents and purposes, I was on the right road heading in the right direction. 
By age 9 or 10 my visible woman organs (breasts) were growing and quite honestly I wasn't very thrilled with them because they seemed to get in my way and served no real purpose that I could see.   
By age 11, I reached my full grown height of approximately 5'. Sadly some of that height got off various exits along the way and never returned to me causing me to be less tall.  I think of it as having paid a toll.  I also began getting my period which I thought (and still think) was the most horrible and annoying thing ever. I had extremely painful cramps and was so irregular that I had no idea when I was going to suffer - only that I was going to suffer.  

When I was 14, it was suggested by a doctor I saw (a GYN) that I begin to take prescription pain pills (Darvocet-N) and an NSAID (Ponstel) "several days prior to onset".  Since I never knew when it would come I was taking them constantly - except for about 2 weeks after and then I'd start again the third week in case I was regular. After a while I pretty much took them daily because... well.. I had to.  

When I was 16 there were several major changes. Most important to me was that I was able to drive. I wanted to get my drivers license immediately, if not sooner and realized that taking any type of medication could be a bad thing. After a nice chat with the GYN we decided to try managing the pain and symptoms by taking birth control pills. (And I can attest to the fact that being on birth control pills did NOT in any way encourage me to have sex with any one just because I couldn't get pregnant)  These pills actually helped me in several ways.  First and foremost - I was regular. I knew exactly when I was getting my period.  If I recall correctly it was between 9 and 10 am on every 4th Tuesday:).  I then took over the counter NSAIDs and although there were painful moments - it was survivable.  The point of all this is that I did not have very fond feelings for any of my womanly organs. 

This was also the year when my mother had breast cancer at age 40. This is obviously extremely significant for me as it establishes a familial link.  
Speeding ahead now I had been encouraged to have a baseline mammography done at age 35 (by various doctors) and did so.  Though I was told to have it done annually, I did it every few years (reluctantly). I guess looking back it probably was not something I felt compelled to do since it was regarding a part of my body I wasn't too fond of anyway. As I grew up a bit I realized that whether or not I'm fond of them, I'd rather keep them.  

As a direct result of my Mom's cancer, both of her sisters had regular mammograms and check ups. Mom is the eldest of 3 sisters with the youngest being just 14 years older then me. 

In 2005, Moms middle sister Aunt Edy (who is 20 years older than me) in the course of a regular mammogram and check-up our breast oncologist (yes we all go to the same one) found a tumor in one breast.  She had a successful unilateral mastectomy and subsequent treatment with no further recurrence. It was classified as non-invasive breast cancer.  

In May of 2006, in the course of a regular mammo and check-up our breast oncologist found something suspicious but very small hiding in one of Aunt Goldie's breasts. It was really encouraging that it was small and we interpreted that as having found it early enough to prevent further problems. She had just retired from her teaching career and was about 61 years old. She had lots of plans for what she was going to do with the rest of her life. Lots. So she decided to go for a double mastectomy with reconstruction immediately. And Chemo. Lots of Chemo. 
Also in 2006, my mother was diagnosed with uterine cancer and had her uterus removed.  She had aggressive treatment - radiation which was successful. 

So now it's my mother and both of her siblings with breast cancer plus mom with uterine cancer. No matter how I slice it that makes my chances of having it (woman organ cancer) higher than average.  The next time I saw the oncologist (2007) he suggested that I have genetic testing done to see if there's any genetic markers or indicators and ordered a mammography and sonogram of both breasts. They saw something "suspicious" and I had to have a breast MRI done.  The MRI was inconclusive as to what they were seeing and a needle biopsy was ordered.  Thankfully, that came up negative and more examination determined that I have a misplaced lymph node that looked like a small growth. 

Several weeks later, the results of the genetic test came back with me having the Breast Cancer mutation. Based upon all of this, it was recommended that I get screened every six months at a minimum and consider having my ovaries removed as well as a prophylactic double mastectomy. Yeah. No. 

In 2008, Aunt Goldie's tumor markers were elevated and it was determined that the cancer had spread. She began another course of massive chemo.  And another course after that. Back then I had a blog I wrote in and I'm going to post it here verbatim:

Thursday, December 4, 2008  3:44 AM

 I am very worried about AG's health. Tomorrow.. or later on she'll get the results of the latest PET scan and MRI of the brain. Obviously the oncologist is concerned the cancer has spread again. AG is a realist - but I'm hoping she's being overly realisty because she thinks her days are very numbered. I realize that the cancer could significantly affect her life -- but I'm convinced (or trying to convince myself) that we're talking years instead of decades - and she is thinking months instead of years. The bottom line is that cancer is cancer. Though it isn't the death sentence it once was, it certainly isn't something one lives with forever. The effects of the chemo itself is devastating. 

Seeing what the chemo was doing was making me hate every woman organ created.  

Friday, December 5, 2008 10:18 PM

 It really is quite bizarre to think that we celebrate that although the cancerous tumor is still hanging around in AG's liver, it hasn't spread. Wewee. I know we have to think positive - and I am, but it's the same old idea to me that when someone is unlucky enough to say fall off a roof and break every bone and become a quadraplegic, that people will say.. wow, how lucky that they lived. I just don't see things quite so flowery. The shmuck fell off the roof. That makes them unlucky going forward. 

But ok. I'll concede that cancer is a different story. Getting it is unlucky. Surviving it is lucky. So I guess each and every day with cancer is lucky. I'm still stressed though. The more I think about it, the more stressed I am. I really would just prefer to find out now rather than later -- it's the constant worry/anticipation/concern/etc that is so difficult. I need to make an appointment for my check up. I'm also having strange menstrual things -- like in between bleeding, heavy as hell periods, cramping... but i'm ignoring it for now. for now.

Wednesday, December 17, 2008 7:20 PM

Life seems to throw some really sharp turns lately. Though on the surface the news was alright - it really is far from that. AG's brain scan was normal - no cancer. The results of the PET scan showed that the metastasized breast cancer is still in her liver. Essentially, the past few months of chemo have not eradicated the cancer. It hasn't spread further. That's the "good" news. It's the you've fallen off the roof and broken every single bone in your body, but the good news is you are alive. Lucky. Day by day I'm seeing her resolve decrease. Her once positive attitude is fading fast. The side effects of chemo are exhausting - and we're all very well aware that at this point the chemo will go on probably for the rest of her life. What is most confusing to both me and my mom, is that the cancer was detected early and it was fairly limited. It has proven to be extremely invasive and resistant. To have this happen to anyone is horrible - but, and although it sounds very cliche - the last person it should ever have happened to is AG. I don't even know what we can do at this point. In fact - there's simply nothing. Obviously we all give 100% of our support 100% of the time. That's a no brainer. But there's got to be something else. Mom and I discussed how we can't bear to see her suffering and at some point when the chemo is just too much for her - that we would actively support her ceasing that treatment to regain whatever quality of life she can before the end comes. If there were a chance that this next round would be effective and she could go off chemo for even a short time -- things would look much better. But we just don't know. No one can answer that. So it's waiting and waiting.

Wednesday, December 21, 2008 11:39 PM

 I'm still trying to maintain the positive mindset but it gets hard. We all know there's good days and bad days.. but each day that is a day is good. The alternative.. is just bad. Today, AG was taken by ambulance to the Hospital. She had the mediport put in Friday, and hasn't quite regained her strength yet. It has been gone for the past few weeks, but the pre-op tests showed she had high bacteria in her urine. They started antibiotics but apparently that and possibly a combo of the anesthesia and everything else took its toll. Mom is worried that this is a result of decreased liver function and the fact that the cancer is in her liver. I'm trying as I said, to maintain the positive thoughts that this is just a passing thing and NOT a result of the cancer in the liver. I hate cancer. I hate the word. Well ok, so does everyone.. but fuck you cancer nonetheless. So they're going to admit her to critical care/ICU and are making sure she's being hydrated. This is just something so scary - but I'm trying hard not to think negatively. Take each day as it comes.

On December 22, 2008 early in the evening Aunt Goldie died. That's it. Thanks for nothing cancer. She was gone. It happened very quickly - she never left the Emergency Room and from what we can tell she didn't suffer and most likely had no idea what was going on. It was also determined that she had Triple Negative Breast Cancer - which is for the most part incurable. Most of the initial chemo she had was aimed at the more common hormonal receptor type. 

**Note: There are many extremely informative websites that go into all levels of detail about Breast Cancer, Genetics, the BRCA gene mutations, risk factors and pretty much anything you want to know. Using any search engine works wonders. Please do not rely on my warped rationale to make any decision about your own situation** 

 And again, this directly relates to my risk of having cancer in some form or another.  However, the idea of having surgery that I may not really need wasn't something I wanted to consider. I rationalized that my chances are exactly 50/50 - either yes I'm going to get it or no I'm not. Even with the mutated gene and family history either I'm getting it or I'm not getting it. Yes. or No. Plus, I figured that unless it is proven that having surgery to remove body parts means NO chance of cancer, the risks of surgery that may or may not work don't seem that impressive. It isn't a cure necessarily was my thought.  

February 2014
Had my Mammo, Sonogram and Breast MRI with no unusual findings. Had a discussion with my oncologist about my reluctance to have organs removed without any assurance that it would prevent cancer. He again mentioned it would lower my risk significantly and that there are new studies out that support this. My mind focused on the simple fact that surgery would mean taking time off work and taking time off work means that my pay check is decreased and there would be absolutely no way to pay my rent and utilities. No way. I have a hard enough time making ends meet - in fact they rarely meet, make that.. they NEVER meet - they just drive around in circles going further and further away from the center.... .... .... .... 

Having said that, I was informed of a way that I could be assured of having sufficient funds to tide me over if necessary. (parents!)  Still, I wasn't sure about what I wanted to do.  I left the office intending to not pursue surgery any time soon.  

Next:  Part 2 - Page 2