Slow But Steady

If you had told me that I’d be playing games and crafting with the kids three days after surgery I may not have believed you.  Now, don’t get me wrong.  I’m tired.  I haven’t slept well since I’ve been home.  I am happy to report, though, that I am still not in any pain.  In fact, the most “painful” thing I’m experiencing today is the darn tape across my incisions.  Actually, I’m not entirely sure if it’s the tape or the incision across my belly button that feels uncomfortable.  Sporadic discomfort is highly tolerable.  My system seems to have righted itself after the anesthesia and now that things are moving along normally (TMI there?  LOL!) I feel almost back to normal…just a sleep deprived normal.

In fact, other than abstaining from normal household chores and taking it easy, not much has changed.  My hormones seem to be relatively normal so far.  I’m sure the body shock is coming, but I haven’t felt anything yet.  And, having my best friend with me has made my mood so much more positive.  This extrovert needs people around!

While I cannot say that your experience would be similar, I can definitely say my post-operative experience is not all that bad.  I think being in a generally good shape has helped tremendously. I am really, really, grateful that I’m doing so well!  And, I’m grateful that each step I take towards keeping myself healthy is another guarantee that I’ll be around for these smiling faces.

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Do You Like My Party Hat?

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The surgery was not nearly as complicated as one might assume.  I arrived at the hospital at my designated time and the hospital staff got me all situated extremely efficiently.  I did have to wait a while for my doctor to complete a surgery and the personnel to ready the room, but all in all it wasn’t so bad to have to sit in a private room in relative comfort.  After all, I got to wear my cool “party hat” as the nurse so aptly described it.  Yep, I’m not beyond humiliating myself for my readers’ amusement.  I didn’t just scare anyone, did I?

The surgery went quite quickly. I was awakened (and rudely, I thought as I would have much preferred to still be sleeping) at 2pm.  Considering that they wheeled me back for pre-op at 11:15, I considered this a quick procedure.  I wasn’t at all in pain when I woke up.  I was, however, emotional.  No one told me that women are likely to wake up with waterworks.  In fact, the stupid post-anesthetic fountains continued to flow throughout that first day at the most irregular of times.  I had no idea why I was crying, I just was.  I was a mess.

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Post-Surgery Yellow Belly

Sleeping was awkward that night.  I couldn’t get comfortable.  The best solution I could acquire was a mountain of pillows so that I could easily push myself up on my elbow should I need to roll over or get up to use the restroom.  Last night was better.  The pillow fortress shed a few walls.  So, there is improvement.

So, how was it yesterday?  Honestly, much better than I expected for my first day of having my innards removed.  My belly looks bloated but it’s not too ugly considering that the sutures are internal.  For the laparoscopic surgery, Dr. Fleming made four incisions–one through the belly button, one on each hip, and one at the bikini line.  And, when you wake up you discover you have a lovely orange glow like a really bad self tan thanks to the antiseptic.  The areas are covered with tape, which should eventually come off on its own prior to my post-op appointment in two weeks.  The discomfort is really minimal.  Those who have read about the procedure on other blogs will have noticed the worst part described is the residual gas from the surgery.  And, I feel as if my abs are stuck mid-crunch.  Dr. Fleming said her other patients have described it as a “pulling feeling,” and I think they are exactly right.  I’ve struggled with how to keep my upper body straight and loose given the feeling in my lower abs.  I have to remind myself to relax fairly frequently.

How did my first day at home go?

So nice of you to inquire.  Well, it looked something like this:montage

Yep, I spent most of my day in the family room sitting with my feet up.  I took a short walk (three houses away) to drop a “thank you” in the mail.  I was told to get out moving as much as possible.  I had to deal with annoying bruises from IV’s on the back of both hands (which I somehow kept forgetting were there and bumped them several times), but that was minimal discomfort.  I watched way too many episodes of House Hunters on Netflix and browsed Pinterest.  And, I did a bit of crafting and snacking and took a nap.  And, at towards the end of the day I at dinner at the table with my family and we played a family game.

It doesn’t seem like much but I was wiped by 8pm. I stayed awake lounging in bed until 10 so I could take my bedtime dose of ibuprofen (no narcotics, people!  I haven’t needed them–yay!).

And there you have it.  That’s my experience in a nutshell for the first 48hrs post surgery.  Today isn’t looking to be much different except that my BFF is arriving at 4pm today to keep me company and play handy helper and chauffeur to my kids!  Whoop!  Chrissy, I can’t thank God for you enough!  She is a bright part in what otherwise looks to be a very, very boring day!

Surgery Tomorrow!

My first surgery is tomorrow!  Yikes!  The kids are at a day camp today, so I’m scrambling and trying to get everything ready so the house can run itself the next few days.  Here’s a look at what that means:

Finishing the laundry I started this weekend.  Bleh.

Seriously, though, you don’t want to start this whole process with the kids coming to you saying they are out of underwear.  Wash those towels and sheets and if the hubby doesn’t get around to changing them this week, no one will die from it.

Prepare for the Apocalypse

Stock that pantry and refrigerator like you have a house of teenagers eating their way through, even if you don’t.  Fruit is always in short supply in our house because we eat it like it’s going out of style.  The produce drawers are now full and fruit is within easy reach of the kiddos for an easy snack.

The pantry has also been stocked up with necessities (peanut butter, rice, and dry goods for meal prep for the week).  Everything is organized and within easy reach.  Seriously, though, I still have a Costco run to do.  We are in need of things like chicken breasts, tortilla chips, and milk.

I’ve saved the two best things for last.  My basket of entertainment is ready to go with books, coloring, magazines, etc.  I’ve had some suggestions to add cross-stitch and paper for making stationary to the basket, so a quick run to Hobby Lobby may still be in my future this afternoon.  I mean, I still have plenty of Netflix to binge watch, but a girl can only take so much tv after a day or two.

And, I am about to indulge in an afternoon of easy baking.  Nothing says stress eating like cupcakes and buttercream frosting!  If I can’t eat from midnight until after surgery tomorrow, you can bet I’m going to be treating myself!

Bring on the Frosting!

Am I…Nesting?

During my first pregnancy I read every mother-to-be book I could get my hands on.  Each book described the stages of preparing for baby, including the final push (pun DEFINITELY intended) to get ready for baby’s arrival.  I’m not preparing for a baby but I am definitely nesting.  The only thing I’ll be delivering soon, however, are my baby-making parts on a platter for oncological dissection.

Preparing for surgery has been quite the process.  First, there’s the initial diagnosis, then the busy search for doctors, then a steady stream of appointments, and finally the reality sets in that, “Oh, crap, I’m not going to be able to do what I normally do.”  And, face it, who makes a home work?  Well, that’s mom.  My husband readily admits that he couldn’t do what I do (even though he works crazy long hours and has a long commute).  The only one preparing for this surgery is me.

Surgery Prep

What does this mean?  Well, skipping back to the fact that I am having laparoscopic bilateral salpingo oophorectomy and a hysterectomy means I’ll have incisions in multiple places across my stomach area (though small).  One will even be made through my belly button.  No, this is not as hard as a c-section.  But, that’s just the external trauma.  Inside, I’ll be missing some important parts.  I’ve read that women feel tired and emotional (damn hormones again) after this surgery and that it’s not really the external wounds that hurt so much. 

http://www.meganmurrayphotography.com
Sam

Post operative instructions include no heavy lifting among other physical limitations.  What this means is no lawn mowing (I share this job with the hubby), no carrying laundry baskets, no hauling groceries, no taking out the trash and recycling, and very few of my usual athletic activities.  Given that I am also in charge of the general cleanliness of the house, I’ll be passing some of those responsibilities of to the rest of the family.  I usually sweep daily and vacuum twice a week (at a minimum). 

We have two large dogs that shed profusely, so a daily sweep is a must.  I also do the meal planning and most of the meal preparation.  I also clean the bathrooms (the kids do help) weekly.  I think my poor family is in for a shock. 

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Available on Amazon

I try to keep my home organized and lacking in clutter.  Last year I read Marie Kondo’s The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing.  I have used her book to make sure I’m only bringing things into my home to “spark joy” and that I’m getting rid of the things that no longer speak to me.  Now, I can’t say that my can opener holds a special place in my heart, but some things are just necessary in a functioning household, especially a household with children.  So, facing this surgery I’ve tried to make sure all of those no-longer-loved items have found their way to Goodwill.  

Put Everything Within Reach

Now, organized is one thing, but practically organized is another.  I highly recommend you move items where theywill be accessible to you and to anyone who comes to help you.  I am having my BFF come into town this week to help me out.  She’ll be preparing meals, running the kids to camp, and putting a smile on my face on a daily basis.  I don’t want to create more work for her.  It’s hard to make yourself at home in someone else’s space, so I wanted to make this week as easy on her as a caregiver as possible.  I’ve made sure all spices (she likes to cook) are organized and in an easy space. I’ve grouped kitchen tools in a practical way, and generally made sure that like items are together and not spread out haphazardly.  I don’t want anyone having to rummage to find what’s needed.  I also moved items to easy-to-reach places in preparation for my breast surgery in September. 

Some hints for your surgery nesting:
  1. Declutter!  Start this job in advance.  Decluttering the space you’ll be spending too much time in is a must.  You don’t want to be staring at a to-do list.  If you are like me, it would drive you nuts.
  2. Clean!  Do those projects you’ve been avoiding.  Dusting blinds, anyone?
  3. Go through your refrigerator and get rid of anything nasty.  Seriously–people will be bringing you food or preparing food for you.   Leave no questionable items lying around or you may end up eating it by mistake.

    Joy of Cooking cookbook
  4. Put everything in it’s place.  Keep like items together. 
  5. Make a list of what should get done when as a help to caregivers.  A schedule may be appreciated.  
  6. Water your plants and tend your landscaping or pay someone to do it for you while you cannot.
  7. Finish any outstanding projects.  Now is the time to get those painting jobs done.  Don’t be staring at it wishing you hadn’t procrastinated.  
  8. Prepare some meals for the freezer for those days when you just need something ready to go.  My favorite make ahead meal is from Joy of Cooking and makes a big pot of red beans and rice!
  9. Finally, gather some things to keep yourself quietly busy.  Entertainment is a must!

Let’s Talk About Boobs, Baby!

It’s less than 48hrs until my bilateral sapling oophorectomy (fancy talk for removing my ovaries and fallopian tubes) and hysterectomy.  And, yes, that’s part of this whole BRCA2 issue that cannot be ignored.  But, the real concern here is breast cancer, right?

Prophylactic Mastectomy

I have been joking for years that if cancer were to be come part of my future, in some way, I’d be glad to trade in mine for a new pair.  I’m a small, B, if I’m lucky.  In fact, I believe the plastic surgeon described me as “deflated,” or something similar.  Moms who breastfed, you know exactly what I mean.  The girls just aren’t what they used to be.  So, getting to “start over” sounds great, huh?  Well, sort of.

If you hadn’t guessed already, I will be having a bilateral prophylactic mastectomy.  There are several types of mastectomy: simple or total mastectomy, modified radical mastectomy, radical mastectomy, partial mastectomy, and nipple-sparing mastectomy.  The choice to have one of these types of mastectomy depends on the woman’s situation, with a radical mastectomy being the most invasive and having the harshest recovery.  BreastCancer.org has a fantastic website offering simple-to-understand yet detailed descriptions of each type.

Now, you may be reading this blog and be thinking, “well, that sucks,” and in some ways, yes it does.  I am the fortunate one in this situation, however.  I am CHOOSING this path.  Women who actually have cancer are not so fortunate.  They may face removal of the lymph nodes, a dangerous and painful procedure with a very long recovery.  I had first-hand experience watching my mom try to recover after having her lymph nodes removed.  She couldn’t raise her arms above her shoulder level for months and her recovery was much more arduous than what I will face.

So, healthy prophylactic mastectomy: what am I facing?  I have three choices:

  1. Simple mastectomy without reconstruction.
  2. Simple skin-sparing mastectomy (SSM).
  3. Nipple-sparing mastectomy (NSM).

I am opting for reconstruction, so that leaves me with options 2 and 3.  In a SSM, the surgeon removes the skin of the nipple and areola and the breast tissue beneath.  In contrast, the NSM leaves the nipple behind.  According to the Breast Preservation Foundation, NSM causes much less scarring because breast tissues is removed through a small incision around the areola (warning- link contains graphic photos).

Now, don’t get me wrong, I’m rather attached to my nipples (pun intended), but the nipples do not retain sensation after the mastectomy.  Having nipples means covering said nipples.  No nipples means I will not have to wear a bra if I don’t wish after this procedure.  To me, the choice was obvious.  I’m not attached to the aesthetics.  I just want my clothes to fit.  I may feel differently when I see my “empty” chest, but at this point I cannot see the value in retaining what no longer has a sexual benefit.  Thankfully, the hubby feels the same.  Honestly, I think he’s just thrilled at the idea of me walking around braless.  Ha!

That being said, I am facing some confusion on how the implant process will work.  I will have an implant because I’m not a candidate for flap reconstruction (for info on that procedure, try the University of California San Francisco Medical Center).  My plastic surgeon, Dr. Hassid, indicated that there has been some change in the medical field regarding placing implants below the muscle.  Information published by the UCSF Medical Center, however, indicates that “an implant or expander must be covered with muscle, not just skin, or it will look unnatural and may become infected.”  The Susan G. Komen foundation also states that step one of the implant procedure involves inserting a tissue expander “in the envelope formed by the breast skin and chest muscle.”  Dr. Hassid specifically said I might be a candidate for placing the implant on top of the muscle.  Now, granted I am interested in retaining a small to average C-sized implant as too much bounce would get in the way of my athletics, but I will certainly be asking Dr. Hassid more about his logic because research indicates under the muscle is the way to go.

Anyone heard of implants on top of the muscle?  My quest to be an informed patient continues….

Bye, bye boobs!

The Road Less Taken

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Taking the Road Less Traveled

When I found out I was BRCA2+ I knew exactly how I would handle the knowledge in spite of the varied options.  Let me preface that statement by saying that I am a mom of two children in my mid-30s.  My “baby” is seven.   My eldest is 9 1/2.  I am done having children, yet I am still considered young. I am active and generally healthy.  I just ran a half-marathon in April and I take martial arts inspired kickboxing twice a week.  I try to eat right (well, besides the fact I have a serious chocolate problem).

When I came face to face with with the diagnosis, I chose to look at it as such–an obstacle with a simple solution.  I don’t need my female parts.  I’m done with them.  Thankfully, my husband supports me in this decision.

Meeting the Gynecological Oncologist

I met with the awesome Gyn-onc, Dr. Fleming at MD Anderson, in July immediately after my return from vacation.  Since I am a teacher, I’ve been off for the summer, and this means plenty of time to meet with doctors.  Thank goodness that’s the case, as I feel that I’ve been living in physicians’ offices since early July.

I could be wrong, but I think I surprised Dr. Fleming by knowing exactly what I wanted when I entered her office. She indicated that she has seen an increase in patients opting for prophylactic surgery, but I think the majority of her cases are women who see her out of necessity rather than choice.

Dr. Fleming was great.  She insisted on explaining all of my options before I even opened my mouth. She made sure I knew that women in my situation usually opt for have their ovaries and tubes removed due to the very high risk of ovarian cancer in BRCA+ women.  When I mentioned the word “hysterectomy,” she immediately wanted me to know that she felt a hysterectomy was unnecessary but there were reasons to consider it if I so chose.

Why keep a uterus I’m not using?  Well, the obvious reason is that removing the uterus is a harder procedure and will require a longer recovery.  And, pardon the graphic details, but its removal will also mandate a vaginal cuff.  As I joked with my husband, I’m going to have my vagina sewn shut.  Wish you all could see the look on his face when I said that!

Feeling Hormonal? Let’s Consider HRT.

Even though more surgery equals a longer recovery and more risk, it’s a gamble I’m willing to make.  Why?  Hormones.  My understanding is hormone replacement therapy (HRT) is simpler when there’s no uterus to complicate things.  Dr. Fleming indicated that too much estrogen can cause uterine cancer. So, if I kept my uterus, I’d be taking a combination of estrogen and progestin to try to combat that possibility.  More cancer?  No thanks.  I didn’t even want to go there.  If my uterus is gone, then it can’t get cancer, and that in itself meant the surgery was worth the risk to me (not to mention the added bonus of no random uterine bleeding).

Hormones are a tricky thing.  And, in doing some independent research, I’ve found a variety of research on the positive and negative aspects of HRT.  A simple google search will reveal a variety of perspectives on the issue, but I highly suggest you stick to scholarly research published by reputable institutions, such as this article published by Penn Medicine News or this one published in Hereditary Cancer in Clinical Practice and accessible online via the US National Library of Medicine and the National Institute of Health.  There are individuals who recommend herbal supplements, those who suggest avoiding any HRT, and there is also a great deal of research in support the benefits and low risks of HRT.  The decision to use HRT should be one you discuss in depth with your physician.

Tuesday is the big day–my first surgery.  I will be saying goodbye to the parts that made me a mother.  Am I sad?  Nah.  Apprehensive?  You bet.  Dreading becoming a hormonal crazy bitch?  Absolutely.

BRCA2+….Which Is Not Positive

When does “positive” mean “negative”: when you are talking about cancer.  Let’s face it; cancer sucks.  There is no way around it.  So, like being “positive” for any other type of ailment what we are really referring to is some very negative stuff.

If you are in the know, cancer and genetics are entwined. There are many mutations shown to have a relationship with breast cancer, but there are two “main” mutations: BRCA1 and BRCA2 (BRCA standing for BReast CAncer).  For the purposes of my blog, I’ll be discussing living as a BRCA2 positive individual.  I am deriving my information from my medical report published by Ambry Genetics.  Ambry has information readily available on its website: Ambry Genetics

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from Caroline Davis2010 on Flickr

You can be a carrier of the BRCA2 mutation and not have cancer.  In fact, both parents have to be carriers for this mutation to manifest in a BRCA+ child (remember those middle school bio lessons?).   My children will have the opportunity to be tested when they are adults to see if they are carriers or possess the mutation themselves. 

Being BRCA2+ I have a lifetime risk of breast cancer as high as 84%.  Given my direct family history of early onset breast cancer, I would say my risks are even higher.  And, unfortunately, it’s not just the risk breast cancer that I face.  As Ambry’s patient guide states, “You have an increased chance to develop female or male breast cancer, ovarian, fallopian tube, or primary peritoneal cancer, pancreatic cancer, prostate cancer, and possibly other types of cancer.”

Faced with this kind of news, what’s a girl to do?  Panic?  Nah.  I am a do-er.  I feel good when I’m in control of a situation. How to feel in control of this monolith called cancer?  Research.  

<The first person I contacted is a friend of mine from college.  Her name is Hilary (here known as Doc H.) and she is now an awesome OB-Gyn out in sunny California.  I knew that I needed doctors, and good ones, if I were going to grab this situation by the balls (or boobs, depending on how you look at it).  Doc. H told me she had a fabulous friend here in Houston who happens to also be a genealogical oncologist at one of the best hospitals for cancer treatment in America.  She referred me to the very awesome Dr. Nicole Fleming.  In fact, the staff in doctor Fleming’s office are so awesome that they called me to schedule an appointment before I could even get in touch with them–and all of this while Dr. Fleming was on vacation.

So, if you are going through this situation, work your connections.  Do your research.  Be informed.  If you are anything like me, you will feel better if you have something to do.  

You are the best advocate for your health, and much of getting the care you need and deserve is based on who you know and what you know.  

Similarly, even if you don’t want to hear it, working through your options takes time.  The obvious recommendations include frequent monitoring through ultrasounds and mammograms, blood tests, preventative medications, and surgery and it goes without saying that each of these methods has benefits and drawbacks.  Your genetic counselor will help you explore your options and so will your doctors, so pick individuals who will consider you and your personal and financial situations when you make your decisions.  

For more information on BRCA mutations, visit the following websites:
>FORCE: Facing Our Risk of Cancer Empowered

data-blogger-escaped-style=”font-family: Arial, Helvetica, sans-serif;”>Susan G. Komen Foundation: komen.org

National Society of Genetic Counselors: nsgc.org

Genetic Testing: I’m a Mutant?

I’ve been waiting quite some time to launch this blog.  Honestly, I should have started writing posts offline much sooner.  Because of my job, I had to keep my situation quiet until I knew exactly what path this journey would take and, as with anything involving the medical field, such paths often take time to construct.  My path began with a little thing called “genetic testing.”

I’m BRCA2+

What does this mean?  Well, according to Ambry Genetics, I have a risk estimate of 45-84% of developing breast cancer in my lifetime and an 11-18% chance of developing ovarian cancer.  I also have an increased risk of pancreatic cancer.

How did I find this out?  Genetic Testing

Well, I knew from childhood that cancer ran in my family.  My mother was diagnosed with breast cancer at the young age of 40.  She had a remission period of five years after her initial bout but ultimately even high dose chemotherapy and stem cell transplants weren’t enough and she passed away at the age of 52.  I was in college.

My mom’s sister also had breast cancer.  She was much more fortunate in that hers was caught early and responded to treatment.  It is thanks to my aunt that I knew I should be tested for the breast cancer gene.  My aunt found out she was BRCA2+ this spring and I immediately began looking into testing for myself.  Up until that point, I only suspected that I was a carrier.  I had met with a genetic counselor after my daughter was born and did a preliminary screening.  Screening and testing are not the same thing.  In fact, this screener, affiliated with the Karmanos Cancer Institute, said that my BRCA1 Proband Probability was .039 according to the University of Pennsylvania model and my BRCA2 Proband Probability according to the BRCAPRO model was only 0.010.  My Proband Probability of BRCA1 or 2 according to Myriad.com was 0.056 and 0.018 through BRCAPRO.  To make a long story short, according to this genetic counselor my overall risk was only 1.8-5.6% likelihood of carrying the gene.

What is interesting about these stats found by Karmanos is that they overlooked my grandfather’s prostate cancer and the fact (unknown to me at the time) that his sister also had breast cancer.  Put these two facts into play and there you have it:  hereditary breast cancer confirmed by an easy, but very expensive, blood test .

Genetic Testing Blood Draw
via Thirteen of Clubs on Flickr

Yes, this is simplifying what amounts to complicated genetics.  My point here is not that everyone should run out and get tested for genetically-based cancers.  What I am advising is that you look closely at your family history and make sure you have all of your information.  And, if you discover additional facts, realize that they affect what could be in your gene pool.

“Now, wait a minute,” you say.  “Let’s go back.  What does prostate cancer have to do with breast cancer?”

Ah, good question.  Read my next post for more info on being BRCA2+.