I Survived!!!

Wednesday was my first day back to work following my PBM. I was worried I wouldn’t be able to make it with the pain I was in from Tuesday’s fill, but when I woke up Wednesday morning, the pain was gone!!!! There’s still a very slight tightness in my chest, but that’s it! Since the pain only lasted the first day, maybe I will complete the rest of my fill at the next visit on September 21...I'll see how it goes and she uses 50cc syringes; I can always stop after one.

Going back to work Wednesday and Thursday was exhausting, but I did manage to work a full 7 hours each day. I have today off ~ I usually don’t work Fridays. On my first day back, I received the most beautiful bouquet of sunflowers from my cohorts in crime, er, I mean my co-workers, Mark and Tammy! Thank you both! They are beautiful. Mark said since I was returning to work, so was the sunshine. So very sweet.

Many many of my girlfriends at work copped a feel of my new foobs with many varied reactions. The hardness of the expanders surprised quite a few! LOL Everyone said I looked great. I’m starting to get out of my funk and am feeling much better about myself. Those negative thoughts are beginning disappear. It’s good to be back and to have the “distraction” of work. I had really missed all of my friends and coworkers!!!

Fill #3...almost there!

I had fill #3 today. OUCH! At my insistence, Dr. Temple put in 100ccs on each side instead of the usual 75. Most of the pain is not in my chest strangely enough; most of the pain is in my left shoulder, shoulder blade and back. My fault, I know! My last fill went so well with virtually no pain and very little discomfort, that I thought I would try more. I’m in a fair amount of pain, although it’s started to subside a little...thank you Advil. My drive home was not fun and very uncomfortable. Since my last fill went so well, I didn’t take a driver with me today...OOPS! Lesson learned.

I’m now at 350ccs, so have only 100 more to go. She said I may only need one more, but after today, I may have less put in next time. We’ll see how long today's pain lasts and how I feel for the next appointment. I’m scheduled for September 21st.

Dr. Evans assisted again today, so with one on each side, today’s fill went just as fast as the last one. Dr. Temple started to giggle near the end of the fill and said “you’ll really notice the difference now!” And, boy what a difference there is!

Here are a few photos after today's fill. The dots are little bandaids they put on after the fill...after seeing them in a photo, they look like bad fake nips to me! LOL The right one leaked when the needle was removed and even after the bandaid was put on and soaked through my t-shirt...I looked like I was lactating! LOL They are coming along really nicely and I am beginning to really like the way they look in clothing...undressed I still am having problems with the way I look, but in clothing, I'm beginning to look pretty "normal"...which is very important to me.

Larger pictures will open in another window.

BRCAnxiety

There are some cute t-shirt sayings out there that play on the whole BRCA thing (I have quite a few of them myself), but I’ve come up with one that’s not so cute ~ BRCAnxiety. I am beginning to wonder if learning of a BRCA mutation isn't somewhat like having Post-Traumatic Stress Syndrome (PTSD). I have more anxiety now than pre-surgery. I’ve even started having panic attacks in the middle of the night...what a treat that is combined with night sweats! I think I’m becoming sleep deprived...my insomnia has returned full tilt! Last night I received a grand total of 2 hours of sleep. I do have some other unrelated personal issues going on right now, and those seem to just escalate my anxieties. Not a minute of my day passes where it doesn’t come creeping back into my mind.

I am an otherwise healthy woman in my mid-forties, have had a hysterectomy, BSO, PBM and am part-way through the reconstruction process. After watching my mom suffer for three months after a terminal ovarian cancer diagnosis and learning of my own predisposition for cancer, I just can't move on. Every little ache and pain sets me off. Peritoneum? Pancreas? Residual breast tissue? Something else??? Since the BSO results in the early onset of menopause, my risk of dying of heart disease rises to the top over my cancer risk!!! So now I need to try to get more exercise, eat healthy and try to focus on good health....not very successful these days but I'm giving it my best. It just seems so unfair! I want my old pre-BRCA life back.

I've just contacted my employer's EFAP program and am awaiting a referral...at least it's a start! I have to keep reminding myself that I need to be my own advocate.

Sorry if my posts of late seem rambling, but blogging to me is like journaling and is very therapeutic. It helps to get this all off my chest (No pun intended!). Thanks for always being there, for your caring and kinds words and most of all for always listening to my ramblings.

Luv & Hugs,
Shari

Counselling following a positive BRCA test result...or should I say the lack thereof!

I find I’m not alone in my struggles with this. It seems I’m not the only one who was never offered any type of personal counselling after positive BRCA mutation tests results and their devastating effects on a person. It’s sad really. I have BRCA sisters all over the world and I know of very few who were offered any type of personal counselling after receiving positive test results.

Sure, we received “genetic counselling”, but nothing to deal with the personal issues associated with it...the fear of cancer, our perception of cancer risk, the sense of being “different”, making the decision to have preventative surgery, the huge loss following surgery, second guessing yourself afterwards..."did I make the right choice?", self-image, etc., etc. It’s a big deal and so many people in our lives, both personal and professional, just brush it off. They figure once you’ve had your surgeries and are “on the other side”, you should just get on with your life and forget about the whole thing. Well news flash, it DOESN’T go away, even after surgery!

It’s sad really, in this day and age, we can test for things such as a BRCA mutation, and have preventative surgeries to reduce our risk of cancer and probably save our lives, but we still don’t know how to treat the people aspects of it...it all seems so cold and clinical. Don't get me wrong, medically, I’m not complaining, I’ve had the best medical team you could ever ask for...having a BRCA gene mutation is like having a gold card for medical care, but the mental and emotional aspects of it all seem to get left behind.

I was never really offered any type of support from my genetic counsellor other than a support group in London. That’s over 2 hours away from me and just wouldn’t work. My sister just confessed to me yesterday (yes another confession...it’s good for the soul), that last Fall she was so worried about me and how I was reacting to all of this (if you don't remember, she tested negative...maybe a little "survivor's guilt"?) that she emailed our genetic counsellor for help. Her response was blah! Apparently other than the aforementioned support group, the only other offer was a “non-denominational spiritual advisor” at the LHSC. That’s not what I’m looking for. No other counselling was offered or was available...if she could come up with something else, she would let her know....needless to say, she never heard back from her.

I have even thought that maybe this is "female" issue. If it was mainly men dealing with this (and there ARE men who deal with this) and they were having to remove body parts, that you could bet your butt there’d be more resources available, but I hope that this isn’t the case; that we’re past all that. This is the 21st century! But again, I digress...I'm feeling rather sensitive these days! I know there is some support out there, maybe in the bigger medical centres, but so far, I’ve found none really available to me.

All that being said, thank goodness for the internet and online support groups such as Facing Our Risk of Cancer Empowered (FORCE), BRCA Umbrella, the world of blogging and even Facebook. As Lisa said, at least we have each other.

I love all of my BRCA sistas...I really don’t know what I’d do without you!!! ♥ XOXO

Feeling the loss of my feminine self...

My BRCA sista and blog buddy, Lisa, made the following comment today on Facebook about this whole process and what she said rang so true with me...“The mental impact is kinda huge though and comes at you when you're least expecting it.” Lisa’s statement has inspired today’s blog about this mish-mash of emotions I’m feeling...the timing couldn’t be better. There are no such things as coincidences, right?

As I recover from my mastectomy the message I get from family and friends is “you’ve made the right decision”.

But some feelings are just beginning to rear their ugly head...I am starting to suffer difficulties in adjusting my self-image to my bodily loss. I see myself as “mutilated” and am terrified of rejection.

I feel that following my hysterectomy and mastectomy that all that was my former female self is gone. I know I am more than just boobs and tubes, but at times I don’t feel like it. I’m scared!

From what I’ve read, these reactions are common apparently. My breasts were a symbol of my femininity, my desirability, my ability to entice. We live in a very breast-oriented society, and it's like everything I can offer a man is gone. It isn't a vanity thing. It's an essential part of my core existence as a woman. Wrong or right, that’s how I feel and feelings are very very real no matter how “sane” or “insane” they may seem.

This BRCA thing with its horrendous chances of developing cancer (and yes, with every new ache or pain I develop, in my mind, "I must have cancer" ~ I think I've had every type of cancer in the last year and a half)...but I digress. As I was saying, this BRCA thing that resulted in me having a preventative total hysterectomy and bilateral mastectomy is a terrible test, and it has the potential to destroy a person...ME! It also has the potential to offer the greatest growth...one day...maybe... but I need to feel secure, that I’m loved for me and not because I’m “attractive”.

At times I find myself starting to withdraw into myself. It takes a great deal of sense of self to project myself as a woman following the mastectomy. I feel damaged. I feel a total loss of confidence.

My family doctor sort of brushed aside my fears, telling me to “'give it time”. Time alone will not take care of this...perhaps an intervention would be a better idea!

I try to wear a happy, confident mask...I even joke about the new bigger boobs I'll have when I’m done with the reconstruction process, but at the same time I’m trying to deny these feelings. I’ve been afraid to let anybody know how I’ve been feeling.

Sorry for the ramblings and please consider this post my Confessional.

EDIT: Please read the comments people have left...I am so lucky to have my BRCA sisters for support...seems I'm not alone.

Listen Carefully....it whispers.