National HBOC Week Starts TODAY!

From FORCE…..

Today, September 29, 2013, begins National Hereditary Breast and Ovarian Cancer Week, and on Wednesday, October 2, we will celebrate National Previvor Day.

In 2010, FORCE made history with the successful passage of H. Res. 1522, the

Congressional resolution declaring the first National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day. HBOC Week marks the transition between Ovarian Cancer Awareness Month in September and Breast Cancer Awareness Month in October.

During this week, we recognize, celebrate, and remember those who have been affected by hereditary breast and ovarian cancer, including women and men with BRCA mutations, anyone with a family history of cancer, survivors of breast and ovarian cancer, previvors (individuals living with a very high risk for cancer), and those we have lost to the disease.

Be a part of the celebration. Share your story and your knowledge. 

Your participation just may save a life.

By participating in one of our activities, you will honor and celebrate everyone who has been affected by hereditary breast and ovarian cancer.

More Surgical Menopause Side Effects

For the past few weeks, I have been dealing with two frustrations, and I wonder if they are side effects of surgical menopause.  The first is migraine headaches.  I began getting migraines in college.  When I was 20, I had sinus surgery (including fixing a deviated septum, removal of turbinates, and some other digging around in there).  Being able to breathe through my nose for the first time in my life seemed to help these headaches, and from that point on, I only got them during my period and even then, not every month.  After I had my son two years ago, I didn’t go back on birth control pills.  The migraines increased in intensity during my period and they occurred consistently every month for the entire week.  They were controllable with Imitrex.

Since I had the hysterectomy at the end of July, I have woken up with a migraine almost every day.  If I don’t wake up with one, then I usually develop one by the end of the day.  I’m popping Imitrex like Tic Tacs, which I don’t think is necessarily a safe thing to be doing, but it’s allowing me to get through the day.

This morning, I woke up with a migraine, took an Imitrex, and got ready for work.  During my commute (just over an hour drive), the headache still wasn’t gone; I began to feel my eyes getting tired and I became nauseous.  I took a second Imitrex and by the time I arrived at work, the headache was gone.  Nonetheless, I decided I had to call Dr Balk.  She suggested switching my estrogen patch to a once weekly, rather than twice weekly.  I didn’t really understand how this is supposed to help, but I’m going to try it anyway.  The prescription is waiting for me at the pharmacy.

The second frustration I’ve been dealing with is my teeth.  I don’t have the best dental hygiene, I’ll admit.  But I’ve always had nearly perfect teeth – no cavities, and every time I go to the dentist, I get complimented on them.  I was just at the dentist in May and she said everything was perfect as always.  But, since the surgery, my teeth have been killing me!  All of my molars hurt when I bite down on almost anything.  This is quite frustrating because I love to eat apples and I can barely chew them right now.  My mom suggested I switch to Sensodyne toothpaste, and I did a few days ago.  I’m going to give that a week or so and if nothing changes, I’ll head back to the dentist.  What I’m most concerned about is my teeth cracking to bits – when I looked up “teeth sensitivity” on Hystersisters, several women reported their teeth just falling to pieces during menopause.  I can almost guarantee that if my teeth start falling out, I will be asking for my ovaries back!

In other news, the results of my bone density scan are back – everything is normal.

Guest Blog at Brave Bosom

I’m so honored to have been asked to write a guest blog for Brave Bosom.

Although, it’s looking like my days of anonymous blogging might be over. I just had to post the link on Facebook because I’m so excited about it, and that link contains a link to this blog.

So a caution to family, friends, and colleagues who might be here now. There are some gruesome surgery recovery pics among these missives and probably way more information than you want to know about me. Continue at your own risk!

Thank You, Senator

photo

I took this picture in support of a grassroots effort to convince congress to put more money into research on breast cancer prevention.  Learn more about this cause and how you can participate at http://www.ywsbc.com.

The note is handwritten on stationary I bought before I had my mastectomy.  I knew many of our family and friends would be cooking and caring for us, and I wanted to have notes made that I could easily send out without writing too much, in case I just wasn’t able to or didn’t have the energy.

The imprint says, “Thank you for supporting our family.  It means so much to us.  Love, Bryna, David, and Theo.”

The handwritten note says,

Dear Senator,

I purchased these thank you notes to send to people who donated to breast cancer research after I had my mastectomy in January.  I am sending one to you in advance for doing anything you can to support research into breast cancer prevention.  Most of my family is positive for the BRCA gene, which puts us all at high risk for breast and ovarian cancer.  So far, too many members of my family have died from this disease.  Because my husband and I are both positive for the gene, our two year old son is at risk too.  I’m asking you to support research into breast cancer prevention so that our little boy never has to worry about this disease affecting him.

It was all I could do not to let my tears smudge the writing.  That probably would have been a bit much….

And Suddenly My Body is Old

Because I recently had a hysterectomy and had my ovaries removed, I am susceptible to bone loss at the same rate as a 50 year old woman going through natural menopause.  The estrogen patch I’m wearing should help counteract that, but nonetheless, it’s a concern.  And, because I have rheumatoid arthritis, it’s even more of a concern.  My joints are already at risk for damage – add brittle bones to the mix, and I’ll be surprised if I’m not walking with a cane by my 40th birthday.  So, my rheumatologist thought it would be a good idea to get a baseline bone density scan, just to keep track of any damage that might be occurring.  And where does one get a bone density scan, you might be asking?  Why, at the hospital’s geriatric center, of course.  That’s right – I’m 36 and now a geriatric patient.

I did have to roll my eyes when he told me that’s where I’d have the test.  I tried to laugh it off, but the idea that my body is getting exponentially older by the day really isn’t as funny as one might think.

So yesterday I went to the Benedum Geriatric Center at UPMC (if you clicked on the link, please note that even my grandparents never looked as old as those people in the header picture).   And I was really unprepared for what I found there.

Every sign in the place was a message about aging – posters advertised services and research studies for issues like memory problems, podiatry, Alzheimer’s, back pain, urinary incontinence, osteoporosis, walking and balance.  I was the only one there playing on my iPhone.  One woman was reading a plastic-covered library book (I note that detail because I associate those with both of my grandmothers who read constantly but only books from the library and they’re always hard-covers with the plastic on them).  The other people were glued to the television watching Kathie Lee and Hoda.  And, I was definitely the only person there under the age of 70.

Wake up call.

When I first discovered my BRCA status, I wrote about what it was like to be 28 years old and walking into the breast imaging center at Rhode Island Hospital.  Everyone else there was middle-aged, and everyone looked at me with pity.  Why?  Because you’re not supposed to be having a mammogram when you’re 28, so everyone in that waiting room was probably assuming that a doctor thought I might have breast cancer.

This was sort of similar.  While no one was really paying attention to me in this waiting room, I had a sort of de ja vu.  I shouldn’t be in this office.  And if I am, it’s because someone thinks I have something wrong with me – something that only old people have wrong with them.  Urinary incontinence? Balance problems?  Bone loss.

I know I act like I’m older than I am – I go to bed at 8:30pm, I don’t like loud music or crowds anymore, and I teach college students (which is somewhat hilarious because I was a terrible student in college!).  But I do those things by choice.  I love being silly, watching dumb movies, sleeping late when I can.  In my head I do feel young.  Unfortunately though, my body is moving on, and there’s nothing my head can do about it.