Beebo

My son and I love Sandra Boynton books.  One of our favorites is The Belly Button Book in which a bunch of hippos talk about their love of their beebos – their belly buttons. I’d never thought too much about my belly button until after I had my surgery in January.  Since then, my beebo is sore almost constantly.  I asked my doctor about this and he said it’s normal – it could take up to a year for the soreness to go away.

So my new concern is that when I have my hysterectomy at the end of the month, the doctor is going to go through my belly button.  I can only imagine if it’s sore now how sore it’s going to be after it’s been mangled yet again.

Poor beebo.  I hope she recovers.

Two New Fears

1. What if they actually find cancer when they go in there?

2. What if I gain a whole crapload of weight after this?

Sadly, I don’t know which of these is worrying me more.

The Plus Sides of Surgical Menopause?

So we know I’m terrified of menopause.  I posted to the FORCE message boards about this.  Here is the link to the thread.  And, I also found this thread that was posted recently.  Both of these discussions are making me feel a lot better about the whole menopause thing – maybe it won’t be so bad after all!  These women all report some very positive outcomes, including weight loss, better sex life, no moodiness, and of course the benefit of no more periods or cramps.

D’Nile Ain’t Just a River in Egypt

It has been so long since I’ve posted that WordPress has done an upgrade and I no longer recognize my blog platform.  Hmph.

It’s pretty clear that I’m in denial.  Since I’ve started seriously planning for the hysterectomy, I’ve actually been avoiding this blog.  I just don’t want to talk about it.  Actually, I don’t even want to think about it.

My big fear is not losing my femininity or some crazy thing like that.  I’m not worried about hot flashes although everyone says I should be.  I’m not worried about my libido or that my husband won’t find me womanly.  I’m not worried that I might grow a beard or lose my hair or have other weird physical symptoms (I have these problems already!).

I’m worried I might sink back into the abyss that I was in during my postpartum depression.  I’ve had clinically diagnosed major depressive disorder with anxiety and panic attacks for almost 15 years, and I’ve been treated quite successfully with drugs and talk therapy for most of that time.  While I was pregnant with my son, my doctors switched me from Celexa, which had been working wonderfully, to Zoloft – deeming Zoloft safer for the baby.  I felt fine mood-wise during pregnancy, so there seemed to be no reason to switch back to Celexa after I gave birth.  But a month after I had my baby, everything changed, and I went to a dark place I wouldn’t wish for my worst enemy to visit.  I woke up every morning at 5am on the dot having a panic attack, crying and hyperventilating.  I then stayed in bed wide awake staring at the wall until 11 am while my husband went to work, and a friend took care of my newborn baby.  By 11am, I was able to wrangle myself into the shower, go downstairs, and be somewhat functional but still never alone with the baby.  I couldn’t leave the house.  I couldn’t drive.  I cried a lot about everything.  By 6pm, I was back in bed staring at the wall while my husband took care of our infant throughout the night.  I stayed this way for three months until I found a doctor who figured out the right concoction of medication to get me out of that hole.

Knowing the ppd was hormone-related makes me worry about losing all of my hormones completely.  What will it be like when I wake up from the surgery?  Will I be moody and hot flashy?  Or will I be sunken into a pit of despair, dysfunctional, imagining walking off the nearest bridge?  This is what I’m worried about.

To catch up on the logistics, I had an ultrasound of my ovaries last week and everything was normal.  I then met with Dr. Sukumvanich and we scheduled my hysterectomy with salpingectomy and oophorectomy for July 29th – I will stay overnight but will be there less than 24 hours.  He says the recovery won’t be too bad – some pain and restrictions on lifting for three weeks.  I liked him very much, but at one point he explained that my risk of ovarian cancer will, after the surgery, be less than a “normal woman.”  I’m usually the first one to say that I’m not so normal, but it’s different when someone else says it about you!  He also explained that he wouldn’t recommend HRT given that I had DCIS and I’m BRCA2+.  So, my options for dealing with surgical menopause are limited.  I am meeting with a medical oncologist next week to determine if there might be some type of hormone therapy that would be safe for me.  He also wants me to have an abdominal scan; I’m slightly worried about this since the last one landed me in the ER.

During the appointment with Dr. Sukumvanich, he asked if I was alone, just calling attention to the fact that I indeed was.  His nurse later asked if there was anyone in the waiting room they wanted me to get.  I know they wanted to make sure I felt comfortable and that someone else would be there to ‘listen’ – I’ve read that you should take people with you to these appointments because sometimes it’s hard to hear what they have to say.  I go alone though.  I’m an expert notetaker.  And I can handle a doctor’s appointment – let my family save their vacation time to be with me in the hospital and during recovery.   Interestingly though, for every appointment I’ve had that’s been related to this procedure (the gynecologist, the blood work, the ultrasound, and the gyn/onc appt), I’ve forgotten my purple folder of information – the one I carried with me everywhere throughout my breast appointments.  This means I’ve had to fill out extra paperwork now and then.  Not a big deal, but I wonder if, subconsciously, leaving the house without that folder is part of my denial.

That night after my appointment, my husband and I had sex.  Since I went back on the Celexa (as part of ‘fixing’ my ppd), my libido has really suffered.  Over the last few months, my new psychiatrist and I have been trying some new medication dosages and combinations.  I’m now off the Celexa and instead taking Wellbutrin and Viibryd; I feel great.  This combination has led to me actually wanting to have sex again!  And while we were doing so, I began to realize how much I was enjoying it, finally after all this time, and I started to panic thinking, “this might be the last time I enjoy sex.”  I began to sob.  I’m trying not to be a drama queen about this, but it’s so much bigger than the whole boob thing.  This really could change my life.  I am a really happy person; I love my life right now.  I’m so worried about losing that in such a drastic way.

Coincidentally, I have sailed down the Nile river (not D’Nile, but the actual Nile) when I visited Egypt in 1997.  I was in a small motor boat with my then boyfriend and a child no more than 12 years old as our ‘captain.’  I am not a religious person, but I remember letting my hand hang over the side of the boat into the water and thinking, “this is where Moses traveled in his basket.”  I remember feeling history  – ancient history.  There’s a metaphor here.  I sailed down the Nile so I’ll sail through the hysterectomy?  The Nile is ancient history therefore so is my uterus?   I don’t know.  All I do know is that this will be hard.  I’d love to say, “and I’ll get through it just like I’ve gotten through the rest of this,” but hey, I’m in denial, so “this will be hard” is the best I can do right now.

Corrections to Last Week’s Article

Apparently the Post-Gazette decided not to print my Letter to the Editor in which I correct many of the mistakes made by the reporter in the article from Friday. Here is my letter:

To the Editor:

Thank you for featuring a story about the Supreme Court’s unanimous decision against gene patenting on your front page this morning. This issue is important for thousands of people and their health, and it’s commendable that you fore-fronted this news.

I’d like to clarify a bit of the information in the article in order to honor my family members who have been affected by Hereditary Breast and Ovarian Cancer (HBOC). Understanding one’s own family history is crucial in protecting oneself from diseases like breast and ovarian cancer, and thus I want to make sure that my family history is represented correctly. I also want Pittsburgh readers to understand why it’s so important to consider BRCA testing, which will, due to the Supreme Court’s decision, hopefully be much more available and not cost prohibitive. Anyone who gets this test will have the power to actually prevent cancer – and now even more people will have access to the testing.

My paternal great-grandmother had some type of endometrial cancer (at the time, nearly 50 years ago, no diagnosis was given). She had three children. Two daughters both had breast and/or ovarian cancer; of their thee biological children, one has so far been diagnosed with breast cancer. My great-grandmother’s son, my grandfather, also died from cancer ten years ago. My grandfather had two sons – his younger son, my uncle, was BRCA2+ and died from pancreatic cancer a few years ago. His son is not positive for the gene mutation. His daughter, however, is BRCA2+ and was diagnosed with breast cancer at age 30. My father is BRCA2+, as are my brother and I. I was diagnosed with very early stage breast cancer in January of this year; I had a bilateral mastectomy a few weeks later and will be having a hysterectomy this summer to hopefully head off ovarian cancer.

Knowledge of my family history and BRCA status most certainly saved my life. Had I not known of my status, I would not have been having mammograms at my age (36), and my cancer would have been found at a much more advanced stage. The doctors found a significant amount of cancerous activity in my breast, but the surgery meant I did not need any further treatment. My BRCA status justified to my insurance company that mammograms were necessary before I turned 40; the cancer was caught four years earlier than it would have been without my BRCA knowledge.

Members of my family have spent total nearly $36,000 on BRCA testing, all of which went to Myriad, a company that prevented any of us from getting second opinions and also prevented any further research that could have helped us make decisions about whether to have drastic prophylactic procedures like mastectomies and hysterectomies. My husband’s family is BRCA1+; several years ago, we paid almost $4000 out-of-pocket to Myriad for my husband’s BRCA test. Had my husband not received an inheritance months before, we would not have been able to afford that test. Now, because we know his BRCA+ status, he is able to be screened for potentially deadly cancers.

The Supreme Court decision is important not only for me and my cousins who are all preventing cancer surgically, but for our children. There are four toddlers in our family right now, two teenagers, and two young adults under age 25, all who have not been BRCA tested – all of them are at risk for having this gene mutation, as their children will be. Because Myriad no longer holds the patent, research can now be done that will help our kids. Obviously, we don’t want any of them to get cancer, but we also don’t want them to have major surgeries, rife for complications and life-changing; a mastectomy and hysterectomy are not the same as knee surgery – these surgeries change your life and having them is a major decision that doesn’t always have a positive outcome.

Further research into HBOC, allowable now due to the Supreme Court’s decision, will allow our children to make even better decisions than we have been able to. Thank you again for bringing this news to your readers.