Wednesday, May 30, 2012

Just when I was starting to feel normal...

Good news!  My autoimmune issue seems to be under control... or not bothering me.  I have alot more energy and I don't feel sore all over all the time.   It's nice.  The last couple of days my right boob has started feeling a little odd.  It kept me up night before last.  It kind of felt like the implant was rotating or something.  Maybe like the magnetic port was trying to get out through the top of my breast... It was fairly uncomfortable.  I will ask the PS about it today, at my pre-op appointment.

Yes that is right - Pre-op appointment!!!  June 15th is the date for my exchange surgery.  Two weeks and two days away.  The week before hand my husband will be out of town, so I'm a little concerned about how I'm going to get everything ready (at work and at home) without having his help.  He also won't be back until really really late the night of my surgery.  My mom has very kindly offered to spend the day/night with me and shuttle the 5 year old around until he gets back.

I have somewhat mixed feelings about the surgery.  I mean I'm excited about being that much closer to being done with this part of my BRCA journey, it will be nice to have the surgeries behind me, but now that i'm feeling so much better, I kind of hate to go into surgery again!  Feels like it will be a set back, back to lifting restrictions, and resting alot and fear of infection, and concern about wound healing, and what if it like sets off my autoimmune thing again, BLEH. 

So I'll just try to look at the positives.  I really do like napping and resting.  I read other blogs with people who are so eager to get back to exercising and being active.  And I can admit lately now that I've been feeling well, it's been nice to go on bike rides (got a bike for mother's day!!) and it felt good to walk the 5k Komen Race for the Cure with my daughter and co-workers.  But seriously, I could be very content if I was allowed a nap every afternoon..

Ok, so speaking of feeling normal.  I had to take my older daughter to the aiport this morning because she is spending the summer overseas with her father.  It didn't even cross my mind until last night around 7:15 on my way home from work (long day) that I might have an issue going through security with magnetic ports on my breast implants!!!  I researched online and asked on the FORCE message boards (while trying to ensure my daughter was set to go)  All I could really find was that I should carry an info card.  well... too late for that!  I don't have one and there wasn't a way to get one from the PS between last night and 7 am this morning when I needed to be at the airport.

So I told the lady TSA agent checking IDs and passes (I get an escort pass since she's a minor so I can see her off at the gate), that I had tissue expanding implants for breast reconstruction with magnetic ports and asked what her recommendation was when I got up to the checkpoint, she said she knew what I was talking about and that the body screener would be more likely to detect them, but it would limit the secondary screening to that general area of my body, where if I went through the metal detector and set it off I would potentially have a more thorough secondary screening (full body pat down?)

I decided to go through the body screener, and sure enough it caught them, so they pulled me aside, and another female TSA agent came over, I explained to her about the implants and she agreed that was likely what it was, asked if I was sore any where and said she'd be gentle and quick.  Then she just very lightly patted around the top sides and did a quick swipe under the breasts, and that was it.  I can see how someone could feel embarrassed by it being out in the open like that, but I didn't have a problem with it.  It was quick and painless and assured the airport I was I wasn't smuggling a bomb in my bra.    HA.  just realized the irony in that.. BRCA + people sometimes refer to their breasts as time bombs before mastectomy.  I got rid of my time bombs and now I'm suspicious at the airport. 

I took the day off work today.  I'm glad I did, I'm super emotional.  No way I could have gone to work.  I remember last time I took her to the airport I got a little teary but it wasn't like it was a new experience... seeing her off like that.  It just hit me really hard this time.   So now I'm going to fix myself up and try to look like I haven't been crying all morning to go to my preop appointment.  HOPEFULLY I'll hear what I want to hear about the implants!

Friday, May 4, 2012

I'm a "Previvor" - are you offended?

Ok, so I was casually surfing the internet for some "previvor" gear I could wear along with the t-shirt my work gave me to wear at the Komen walk next weekend, when I came across a message thread (on of all places) talking about whether or not the term "previvor" is offensive. 

I read all 6 pages of posts!  I was horrified by the posts on there.  There were a good number of sensible people who either weren't offended or acknowledged they didn't have enough info to feel one way or the other.  But the people who were offended - wow. 

I'm pretty sure I had a post about being a previvor early in this blog, but I'll cover it again.

From the FORCE website (

Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.
To me, the point here is that we, (this group of people - and myself) are in a unique, life altering situation and it's helpful to have a term to define ourselves by, especially when so many are involved in the breast cancer awareness efforts.  It's so much easier to say "I'm a previvor" than say "I have a genetic mutation and extensive family history and have an 84% risk of getting cancer myself, and it will likely kill me like it did other women in my family before I turn 40, and there is a 50% chance I passed this on to each my of daughters and I live with fear for my life and for my children every day".

The main point of contention on the discussion thread seemed to be the misconception that "previvors" are just out to get attention and get the same sympathy, or "steal the thunder" of cancer survivors.  Keep in mind, not a single one of those offended indicated that THEY were a survivor.

Some of them said that the term previvor implies that cancer is preventable and survivors simply didn't do what was necessary or try hard enough to prevent it.

One person went as far to say that they were offended because the term is attempting to draw similarities between being a "previvor" and someone who is actually a "survivor" of breast cancer, and goes on to compare "having a double radical mastectomy back in the days" (a survivor) to "having a little breast tissue removed".(a previvor)

I wish my baffled speechless silence could resonate here in this post.

But since it can't, I must find and apply words -

PRE in previvor is about a predisposition (higher risk), and of course knowing you're at higher risk causes some (most?) to want to do what they can to TRY to prevent it.  I still don't understand how that indicates that a survivor (or someone who sadly didn't survive) didn't "try hard enough".  I think we all know that isn't the case.  I know that no matter "how hard I try" I might still get cancer, and it might still kill me, and I hope no one will think less of me for it.  I certainly don't think less of my family members who lost the battle.

The comparisons of surgery is just ridiculous.  Of course someone who goes through Chemo and radiation and gets horribly sick and loses their hair and has poor healing from their mastectomy due to the treatment, has a much harder go of it that the preventative route - THAT IS WHY WE DO IT PREVENTATIVELY.  

But at the same time - and I'm sorry if this offends - I had a surgical biospy 4 years ago to remove a tumor (which turned out to be benign).  Had that tumor turned out to be cancer,  I could have left with that half inch scar and tumor completely removed and called myself a "survivor", and that in no way compares to what I've been through the past 2 years since learning of my BRCA mutation, with the fear, the mastectomy (4 inch scars across each breast) the complications (nerve damage, nagging pain, less than ideal cosmetic outcome), and the future which will include removal of my ovaries, early monopause (which increases risk of heart disease) and knowledge that sadly it likely won't stop with me because I already had children before I knew - and my children have a high risk of having to deal with this too.  It's far from simply being "a choice I made".

"The Cure Begins with Education"
fitting huh?
The reason I was looking for previvor stuff to wear at the Komen walk wasn't because I was hoping to steal attention from anyone else... or get sympathy...  I thought the event was about breast cancer awareness, so I could walk the walk in simply my work issued event t-shirt (which is really great actually), which is still for a great cause, but I kind of feel like I should seek out opportunities to go the extra mile for promoting awareness of breast cancer. 

Does that hurt anyone?  Does THAT offend?  So if wearing a pink and teal ribbon caused someone to ask me what that was about, I would have the opportunity to tell them, no I'm not a survivor - I'm a "previvor" and then turn my experience thus far with hereditary breast cancer into something potentially helpful for someone else.  I was looking for a conversation starter. 

Maybe by spreading awarness of hereditary breast cancer and FORCE and "Previvors", people my age who never would have thought they were at risk would look a little closer.  Maybe people would make the connection with seeing my daughter standing next to me, that risk doesn't start when you're 40.  Maybe people wouldn't be so closed minded and insensitive to a group of people who are facing their own very real nightmare, even if it's not the same as having cancer (again I never said it was).