Monday, August 31, 2009

Girlie parts = trouble makers (TMI warning) - LONG

And now for today's ramble....as the thoughts I'd wanted to blog this past week slowly percolate up to the surface...sorry this is so long and sometimes TMI...but it's my blog haha :) So...I've decided I no longer want most of my girlie parts. I already had both breasts removed and replaced (annoying reconstruction still in progress). Sure, when the reconstruction is over I'll have a perky set that will never again require the use of an underwire bra (or any bra for that matter - yay!)...but getting to that point has been annoying. These "tissue expanders" that stretch my breast skin get filled up with saline. They're very large expanders that cover the entire span of the breast area so I can feel them top, side, and bottom. They have metal and magnets in them which are used to pull the valve to the surface so that more saline can be injected into them for further expansion/filling. I can feel them with my hands but I can't feel myself being touched by my hands - still totally numb nearly 12 weeks after the surgery. The actual expansion injections don't hurt at all - they put a numbing cream on the skin which as I said is already still numb and they pump saline in and my chest feels tight for a few days from stretching the skin and then repeat as desired every few weeks til you reach the goal size. I've had two expansions and will probably have one more and then after chemo and before radiation the expanders will be swapped out for implants - that'll be my next surgery. Knowing that the next step after chemo is a breast surgery, I've begun to really think about all of my girlie parts. The benefits, the risks, etc. Some initial reading about how removal of the ovaries can improve breast cancer survival longevity and prevent ovarian cancer has led me to think that my next surgery will involve more than breast implants. I don't know if it can all be done at once but I've decided that I no longer want my ovaries, uterus, or cervix. I want them out. Just like I wanted both breasts removed to eliminate cancer's playground, I'm realizing that the f***er's playground is expansive and connected and that there are real risks to keeping unnecessary parts. I've noticed lately that the medical community tends to be very conservative when dealing with breast cancer patients - perhaps in response to women who feared being disfigured (which no longer happens by the way) by a mastectomy or who hold strong attachments to their female parts/organs as if it defines them as women, or perhaps it's driven by a desire to minimize costs - I don't know (and these are topics that are far too complex for me to approach right now while discussing my feelings on my own girlie parts). Whatever the motivation, I found it evident early on when two different surgeons (one crappy one and one phenomenal one) both told me my cancer could be removed via a lumpectomy but when I responded along the lines of "oh hell no, we're taking these suckers off", their tune changed as if I had just delivered the best news they'd heard that year. I could tell that my surgeon (the phenomenal one, of course) was relieved and impressed that I wanted to be aggressive by having a bilateral mastectomy. Maybe she knew from the questions I asked that I had done my homework and didn't need her to lay it out for me (though I wish she would have anyway). She's truly among the best in the country and I am glad she was my surgeon - I'd choose her again in a heartbeat. But I wonder sometimes why she and other surgeons I've been hearing about aren't more forthcoming about the aggressive options available and their pros/cons, the studies that can help guide us - even though many contradict one another - all of this is powerful information which can enlighten and confuse - but nonetheless should be brought to the table before go-time, in my opinion. Since beginning this journey I have met many women battling breast cancer - women of all ages and backgrounds. It amazes me how many women are steered in the direction of the lumpectomy, and how many take that route only to find themselves having a mastectomy later on either by necessity or by choice. Certainly there are many women who have successful lumpectomies and those that have mastectomies that still don't fare well in their battle - I'm not saying one way is right or wrong since nobody really truly knows. However, my aggressive personality and intense desire/will to be alive to see my son grow up and become a man and father does make me surprised when I hear a triple-negative or HER2 positive BC diagnosis is being treated conservatively when we're dealing with some of the most aggressive forms of breast cancer with higher rates of recurrence. The idea of this shit coming back or taking residence elsewhere in my body scares the crap out of me so I just keep thinking of how to do whatever I can to avoid those outcomes. It is an individual choice, one made with the fear of death at the forefront of one's mind. You just can't imagine what it feels like to be faced with such decisions until after you've heard those words "You have cancer." Add the element of not being an expert on the subject at hand and being totally dependent upon the knowledge and experience of others who themselves don't have the critical answers. It's daunting beyond comprehension. Then you start considering all the possible side effects of surgeries, chemotherapy, radiation - it's a lot. If you were to read the drug inserts for chemotherapy and thought for a minute that you'd experience all those side effects you might convince yourself you'd be dead by dawn the next day. I was terrified before I started chemotherapy because all I kept hearing about was how sick it makes a person, how it is basically poison. And I remember watching David, a boyfriend of mine who died of cancer in 1998, go through it - it was horrendous. But in order to beat cancer I have to fight it with what's available. I just have to trust my doctors, nurses, and myself to do everything possible to protect you from side effects and benefit from the "God given liquid gold cure juice" as I like to call it. It's scary, so I understand why some people may want to avoid some types of treatments available. But I want everything they've got - I want to live and I'll give up a lot to achieve that goal...A LOT...including my girlie parts (and perhaps much more if it would help). To be clear - I respect EVERY cancer survivor's decisions and opinions on their own medical decisions/choices - only you and your doctors can know what's best for you in your situation - I am not an expert - just a very determined, angry and scared warrior wanting to unleash every available weapon on this f****er. I hope nobody misunderstands my comments to be a criticism of their choices in any way since that is not my intention. I remember my first consultation with my oncologist - the talented Dr. Glaspy. What a brilliant man he is. I remember my conversation with him about my ovaries - keep 'em or ditch 'em - and how he felt the answer may need to depend on the BRCA1/2 gene test results - or not - depending on how I felt about it. I remember though that regardless of the test results, the ultimate answer he gave me was to ditch 'em (though timing was discussed and he thought it could wait til I started menopause if the gene test came back negative). Well my gene testing was negative, but the more I read about the connection between breast and ovarian cancer and the survival rates of the latter due to most cases being detected too late, I'm totally certain I want them out of my body, pronto. So, if my ovaries are going to go, I may as well get rid of my uterus and cervix too - I already know my cervix is trouble - I had precancerous cells removed from it many times in my twenties, which I later learned is the reason I ended up with the condition "incompetent cervix" during my pregnancy with Cooper. Well, if you know me, I don't accept incompetence in just about any aspect of my life so I think it's time they get "laid off" because if it's not competent then it does me no good any other way, so....cervix, you're fired! LOL. My girlie parts don't define me - they only hinder me from realizing my full potential as a mother, wife, daughter, friend, sister, cousin, niece, mentor, a cancer survivor. So I want them out. Unless someone presents me with evidence that taking them out would actually increase my chances of cancer recurrence or spreading, they're coming out. Now I just need to sit down with Dr.Glaspy and figure out how to make it happen and when. Ok, now that's off my chest I'm taking a nap. God bless you, my friends and family. I love you.

8 comments:

  1. Hi .. I'm a lurking mommy from the Aug 08 playgroup and I just wanted to say that you are an amazing and brave woman. And I know that, as the firecrackers say, you will "kick cancer in the ass".

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  2. From what is sounds like, I think you are making all the right decisions (not that it matters at all what I think). Get RID of it! Get RID of these possibilities for reoccurrence! You are beating it, Julie!

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  3. Not much to say to this one other than WOW! Whenever I tell people about you one of the first things I say is "she doesn't take anything sitting down and will fight for what she believes in." This post pretty much proves that point to a 'T'

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  4. You did a fine job writing how you feel and why, Julie. I've said it before, your writing should be published and you should become an advocate for other people with challenging illnesses. God bless...

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  5. You are a beautiful amazing woman no matter what parts you have! You rock ! I can't imagine what it must be like to make these decisions but I am sure I would feel like you too! You are badass! Kick that F****er in the ass!

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  6. Julie - great post! I look forward to reading what further information you find on this. I didn't have a choice - the doctor recommended lumpectomy because my lump was in my armpit at the very edge of the breast tissue - but in some ways I wish they were both gone (along with the chances of recurrence).

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  7. You go girl. We don't need any parts except our hearts to be girlie!!!!!!and to be a mom, wife, friend, etc etc. Get rid of them! You don't need them :)

    You are so amazing!!!!

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  8. As tears roll down my face from reading this and feeling your emotions(and relating to some of those emotions on so many levels)all I want to do is fly to CA and hug you. However, it's not because I don't think you can handle this, it's because I just wish you didn't have to.

    Katie

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