D-Day - The Beginning

My name is Dina, I am 39 years old - moved here to Dewey, AZ after 10 years in NYC to be close to family and raise our children. I have an awesome husband of 4 years, a 3 year old daughter and an 11 month old daughter. First of all, let me say that this blog is really just a place for me to vent and get all these feelings and thoughts out of my brain to make room for more feelings and thoughts - cuz they seem to be overflowing through this experience. I'm not going to edit anything I say here - so please know that the entries may not flow correctly, will be very sporadic at times and might not make sense, but that's the way our brains work - or at least mine does. I will however try to make sure I spell everything correctly though - that drives me nuts. So here we go - my journey with my boob, and I'm not talking about my husband.

I was diagnosed with breast cancer on April Fools Day - just a week ago or so - are you kidding me? I don't think I really believed it at first. I mean, I felt a lump under my arm a couple weeks prior, thought it was going to be the same crap all OB medical professionals had always told me "it's a swollen gland" and to "stop eating chocolate". But it was a swollen lymph node - and the lump they found is something I didn't even feel - my OB didn't feel it either - and it's cancer. I have cancer. I'm still not used to saying it. I'm 39 years old, doesn't this happen to older people? To other people? I think subconsiously I thought I really knew enough people who had it, or knew of enough people who had it to statistically be safe from it - how naive is that!!! How 'holier than thou' is that thinking? But I really did have those thoughts in the back of my head when I would hear any stories of people, or from people with breast cancer. My surgeon up here in Prescott (who is awesome btw) says I really should go to Phoenix for further treatment/surgery - that they are more equipped at the Mayo Clinic to handle these things. So we call and book an appt with the Mayo clinic - who are supposed to be the BEST, right? Well, they probably are, but I don't get to go because although they are contracted with Aetna (my insurance carrier) they just aren't contract with the subdivision program of Aetna in which my particular plan falls. WHA? Sorry, but who can afford to go out of network with the Mayo Clinic? So, I have NO IDEA where to go, cuz, well, never had cancer before, where do cancer patients go? I feel like I'm wasting time while this cancer continues to grow in my body - I need to do SOMETHING to get it out - I have children who need me, right? So I look up Cancer Centers of America - and talk to a lovely lady who says "I know we take Aetna, I don't think there will be a problem but I'll check and give you a call tomorrow". I can't even get the words "I have cancer" out of my mouth without breaking down - when will that stop? Anyhoo - Cancer Centers of America - same deal as Mayo - except they tell me that they will only charge me the out of network 50% - $75,000 just to get started. Hmmmm, didn't bring my checkbook. You know, I have been paying health insurance premiums since I was 17 years old (not kidding, I've been working that long, in the insurance industry too mind you up until 2007) you would think I would be able to go where ever I wanted to have my cancer treated. Not so. Luckily, I decided to share my story on my Facebook page, hoping some old dear friends would reach out to me - they did - and I got in touch with an amazing surgeon in Phx - AND I emailed our President to tell him how disgusted I was with the health care system. After I sent the email though, I was a bit embarrassed to send such a complaining email without offering a solution. I always hated people who complained without proposing any sort of solution. So I'm working on how I would propose to solve this health care issue - I'll let you know what I come up with.

I have invasive ductal carcinoma - and I will need to have at least my right breast removed, then treatment of some sort afterwards. Chemo, radiation and/or hormone therapy. As I type this, it still isn't really sinking in. A masectomy - me. Wow. I might even lose my left breast as well - I am having genetic testing done to see if I have the breast cancer gene - which personally I think is HUGELY important. Not only for me, but for my girls as well. This will determine if they think they can save the left one. If I do have the gene, then I have a double masectomy and then lose my ovaries too a year after the masectomy. I had no idea - my mother says "just have them take your uterus too, I mean what's the point?" Is it stupid I want to hold onto to somthing that makes me a woman?? I think I have defined myself by my body and my organs - maybe I'm a woman just because that's who I am - not who I happen to be physically designed to be. To face the truth of having to lose all these female parts - these are the thoughts of 'self' that are now crossing my mind. What makes me - me? This gene test will determine a lot of things, and I'm going tomorrow morning.

I spoke with my Aunt tonight who had a masectomy 25 years ago. As she told me the story or her unveiling her removed breast area for the first time (back then they didn't do reconstruction at the same time like they do now - she had to wait a year) her voice is quivering on the phone - she said she removed the bandages in the bathroom with her husbands help and said she just stared into the mirror - tears streaming down her face. Her husband turned her away from the mirror and pulled her into him and held her. She said as she was telling me this story, it felt like it was yesterday. I can't even imagine how it will feel to lose this part of my body - this is a moment for a woman that is raw and open and horrible - and even 25 years later, she is still emotional about recalling this moment.

Late now, gotta get some sleep - but will write tomorrow - I will write every day through this process - or I will dictate and have someone else write if I am not able. Genetic testing tomorrow - let's cross our fingers. I try to fall asleep at night with happy thoughts - or I will have continual nightmares - I choose to use the memory of Madeline gently patting my boob saying 'poor poor boobie - can I give it a kiss mom?'. She rocks.