Jolie’s Miss

Help us Angelina Jolie; you’re our only hope.

 

It’s a bit after 7:30am est, so by now many people have seen Angelina Jolie’s piece in the New York Times relaying her story of her preventative mastectomy.  In the hours since it’s been posted, there are already 125 comments supporting Jolie’s bravery in making the decision to prophylactically remover her breasts, as well as her bravery in telling the story to an international public.

I have a bone to pick with Jolie, however — first let me say that these are solely my opinions and I am not speaking for FORCE in what I am about to say.

While I too applaud Jolie for her bravery, and as a BRCA mutant I’m appreciative that she’s brought some attention to our cause, she could have done more.  Her big miss – the opportunity to raise awareness for our flagship resource, FORCE. While her story might be enough to educate many people about the issue, her best gift would have been to lead them to FORCE.

Jolie thanks her partner, Brad Pitt, for supporting her through the her surgeries.  But, I’m willing to bet that she had support beyond Pitt.  I find it difficult to believe that in her journey to pursue genetic testing and prophylactic surgery, she did not once encounter the FORCE website.  It is nearly impossible to do any research on BRCA and not encounter materials or documentation from FORCE.  I find it unlikely that a genetic counselor did not mention FORCE to her as a place to find support.  We don’t all have Brad Pitt to support us – but we do all have FORCE!

Many people donate money to the American Cancer Society or Susan Komen, and while these organizations do help all of us who have had cancer diagnoses, FORCE is the only organization that provides resources to people with HBOC genetic mutations in order to help them make choices about what to do with that information.  They are the main source of support for “previvors” – those who know that cancer is around the corner and struggle with how to deal with that reality.  FORCE supports women who have had major surgeries prophylactically – choosing these surgeries (rather than being forced to through a cancer diagnosis) is a hugely emotional decision, and the aftermath requires a particular sensitivity that only FORCE provides through its message boards, blogs, conference, and other resources.

And FORCE needs financial support.  Recently, they’ve asked all of us who subscribe to their newsletters and emails to create Heroes pages – places where we can tell our stories and ask for financial support from our friends and families.  This is my cousin’s heroes page; this is my friend’s heroes page; this is mine.  If Jolie’s story made you feel moved to do something, even though she didn’t ask you to – I’m asking you to. Support FORCE.

I hope I’m wrong; I hope that Jolie has already written a big fat check to FORCE to thank them for helping her and others.  But that needs to be made public too, so that people who want to support Jolie know how to do it.

It is important that we tell our stories.  I’m not just referring to BRCA mutants – it’s important for anyone to tell his/her story.  But it’s more important that your story call people to action.  Your story must do more than simply raise awareness – it must cause us to act, to support the cause you’ve brought our attention to.

Injury Relapse

Well, I posted a week or so ago about my chest muscle injury.  It actually felt fine only about two days after I wrote about it.  So I continued to push and push (including an hour or so of raking crap off of our side lawn with a snow shovel, as well as installing two window air conditioners by myself), and of course, now it is hurting again.  The pain is really a pull that is sort of under my right arm and around to the clavicle.  No time to elaborate really, but I’m seeing the plastic surgeon in two weeks so I will definitely ask him.

More Weight Loss

If you read my entry on whole belly, then you know that I really need to do something about how strange my new torso looks.  Weight loss is really the only option, unless I want to do some elective surgery and get my remaining stomach fat suctioned out.  I’m not really up for that, so dieting it is.

I do look weird right now.  My lower stomach is flat and looks nice in pants.  But I still have this beer belly like tummy, my arms are still flabby, my ass is still wide and has what some people refer to as a “shelf,” my thighs are still giant, and my face is still very round.  So even though I had a lot of weight removed from my stomach, I am still clearly a “fat girl.”  Perhaps I should just be happy to have had some of my fat removed, but unfortunately, it’s just left me uncomfortable and even more self-conscious.

My goal for the last few years has been to get under 200 pounds.  My mastectomy did that for me – when I came out of surgery, I was 196.  Goal met!  For the last three months since the surgery, I have made a lot of changes to my diet – not necessarily dieting, but changing what I’ve been eating.  I have stopped eating anything that is artificially sweetened, whether with corn syrup or with some kind of chemical sweetener like aspartame. I have stopped eating anything with hydrogenated oils or enriched wheat products (so now I only buy bread and pasta where “whole wheat” is the first ingredient).  I have switched to real products – real butter instead of margarin, real syrup instead of who knows that that other stuff is, real oatmeal instead of the instant packets, real eggs instead of egg substitute, real milk/cream instead of flavored coffee creamers.  So, in a lot of ways, my new diet has more fat and more calories than my previous one.   I won’t say I don’t cheat – it’s hard to eat out and follow these rules unless you just order grilled meat and steamed veggies.  I like to eat what I want to eat on a restaurant menu – if I’m paying for it, I want to really enjoy it.  But overall, I am more conscious about eating good-for-me real food and it’s helping.  My goal was to get under 190.

I weigh myself every day, and today I discovered that I have lost six and a half more pounds and am now officially under 190.  It has been six years since I weighed 190 (that was my weight when I met my husband), and I don’t remember the last time I was below it (I suspect it was when I started my MFA in 2000).  My next goal is 175.  When school is over in mid-May, I will be able to start swimming every day.  Fifteen pounds is probably not a reasonable goal by the time school starts in August, but I do think it’s reasonable to aim for 15 pounds by December – that’s two pounds a month, which is slow but healthy.

Why by December?  Because that is hysterectomy month.  I know once I’m in menopause, it will be even more difficult for me to lose weight.  I want to try to lose as much as I can before my hormones go berserk and I have less control over my metabolism.  It’s hard enough at my age, but it will be even harder after that surgery.  I know that some women lose weight being on HRT, but I’m not counting on being one of those women.

Educating the Eye Doctor

Yesterday I went to the eye doctor.  For a few years now, I have been noticing white spots on the edges of my cornea.  I know I have them even before looking in the mirror because I can feel that my eye is extremely dry and feels like there’s something in there, like an eyelash.  My doctor in Vermont really couldn’t diagnose what this is, so I figured now that I live in a real city, I should try a new doctor.  Dr. Vicki is my mom’s ophthalmologist – these two ladies love each other.  I could see why – she was really nice and I liked her a lot.  Below is our pre-exam conversation, to the best of my memory; parentheticals are my commentary:

Dr: Have you ever had any eye disease?

Me: No, but I do have Rheumatoid Arthritis and I suspect that could be related to this.

Dr: Oh yes!  Spots on the cornea are often related to autoimmune problems.  So what medications are you on?

Me: (I list the meds – if you’ve been reading my blog from the beginning, you know how much I absolutely hate doing this)

Dr: So you take the celexa and wellbutrin – for depression and anxiety?

Me: Yes.

Dr: Any other illness or surgeries?

Me: Oh, yeah. (seriously, I had forgotten!)  I had Stage 0 breast cancer in January.

Dr: I didn’t know there was Stage 0.  What is that exactly?

Me: It means they found pre-cancerous cells that would turn into cancer.

Dr: How did they find that? (I see her click the box next to ‘cancer’ on her laptop screen)

Me: Mammogram. Well, they saw spots on a mammogram and then biopsied the spots.

Dr: But how did you know to get a mammogram? Did you feel a lump?

Me: No.  I have a BRCA gene mutation.  So I’ve known for seven years that breast cancer would be likely, so I’ve been having mammograms regularly for a while.

Dr: But your mom doesn’t have any history of breast cancer.  How did you know about the BRCA mutation?

Me: My father’s side of the family.  Everyone has it or has had it.

Dr: Oh, I didn’t realize you could get that from your dad’s side of the family.  (I wish this was only the first time I’d heard this from a medical practitioner).

Me: Yes, you can.  (here’s where I really feel the need to educate…) And thank god I knew – I would have had a tumor growing in my breast for a long time before I’d realized it, because I wouldn’t have even thought to have a mammogram at my age if it weren’t for knowing about my BRCA gene.

Dr: So are you on any treatment for it – Tamoxifen?

Me: Nope.  I had a double mastectomy in January.

Dr: Really?

Me: Because of the gene, I really couldn’t risk it.  And I had been planning to do the surgery prophylactically anyway.

Dr: So you were pretty prepared then. That must be why you handle it so well.  You don’t seem at all phased by talking about it.

Me: I guess.

Dr: Wow.  You have it pretty hard with all this health stuff.

Me: It sounds a lot worse than it is.  I honestly never think about any of it because I feel totally fine.  It just sounds like a lot when I have to list it all for a doctor.

That was really the extent of it.  I suppose I shouldn’t be surprised that an eye doctor isn’t up-to-date on breast cancer research, but I feel like as a woman, she should be!  Next week I go to the dentist – can’t wait to see what she has to say.

Injury

I’ve hurt myself.  It’s completely my fault.  This morning I woke up with some soreness in the upper right quadrant of my body – I really couldn’t tell if it was my neck, shoulder, or chest. I’ve tried to just ignore it, hoping it would go away, but mostly I’m in denial. Since my blog is supposed to happen in real time, all day I have been thinking “I should record this.”  But, the whole being in denial thing meant I pushed it aside until now.

It’s clear now that the soreness is coming from my right breast – probably the muscle under there.  I’ve been working away at my desk, which means my 11 pound cat is walking back and forth across the keyboard.  I usually lift him under his tummy with my right hand, balance him in that hand using the strength of my right arm, and then put him on the floor – about a hundred times an hour.  As I’ve been doing this, I can tell the pain is not in my neck or shoulder, but in my chest.

Like I said, it’s completely my fault.  Once the doctor said I could begin lifting my more-than-20-pound son, I took that to mean I could begin lifting whatever I wanted.  So it’s pretty frequent that I’m lifting not only my son, but a few grocery bags and a diaper bag, along with my books and work things, his and my jackets, our lunch boxes, and whatever else happens to need to get into the house, all at the same time.  I’m also doing a lot more braless activity.  Since I’m not nearly as saggy as I was before, I do a lot more movement around the house even if I’m not wearing a bra (say, dancing with my son, or chasing him in circles around the couch).  This is probably pulling on those muscles more than I realize.  And, because I have been getting up at 5am to go to work instead of to the gym, I haven’t swam in weeks.  Thus – pulling a muscle seems somewhat inevitable.

I’m not calling the doctor just yet.  I figure I will give it a couple of days, see if it starts to feel better on its own.  If it starts to feel worse, then I will call him.  For now, I’ll just allow the self-pity to settle in, and I’ll enjoy the next few hours before my husband gets home from work, reads this, and then yells at me for overdoing it.