Getting to the Place of Certainty

I decided to start to talk about my journey with brca1 about 8 months after finding out I was positive for the mutation. When I started my blog I had already gone through the stages of what I was going to do with this new information and had already made some  plans. People often asked me about the process to getting to that place of certainty.  So with that said, I will attempt to fill in a few of the holes missing from this journey I began over a year ago now.
Since I have come forward with not only having the brca1 mutation but also what I am going to do about it, I have been getting responses like, "I would do the same" or "smart decision" etc... But I must say, as black and white as it might seem- it wasn't always like that for me.  I am a person that is a big believer in Eastern medicine.  Every month or so I am treated by a Ayurvedic/Chiropractic practitioner that does energetic clearings on me to prevent and heal illness and keep me balanced.  I believe in the work and the possibities that surround it.  I had to look at the big picture and if I could prevent the cancer from growing in me-for sure. I read articles on line and talked to doctors with both a Western and Eastern perspective.  That's when the marathon training came into play.  I would run and think about all the angles and choices I had.  You see, the doctors won't tell you what to do -you are not sick- it is preventative suggestions.  My options are: yearly MRI's with mammograms, ultra sounds, blood tests that keep track of hormone levels; the medication Tamoxifen or having a double mastectomy and hysterectomy.  With this all in my head, like Forrest Gump,  I would run and run and run and sort out my thoughts.  I then started sharing my thoughts with a few people.   I don't know what I was thinking or looking for. Was it justification for a decision I had already made deep inside, or was it to hear myself work it out? Either way I needed to go on this ride and a ride it was. One person said if I were going to chop my breasts off they would hold me down and knock some sense into me.  She said that I need to print up a picture of a mastectomy and stare at it every morning for a month before I made such a choice. I heard  "free boob job" and "It must be a Californian thing"-(in regards to choosing the double mastectomy with reconstructive surgery). Then there was the opinion that with proper testing they would catch it early so why rush into anything or what if they come up with a cure in the meantime. Speaking to friends and family that are also positive for the mutation was comforting yet because they are on their own journey themselves of course will have their own paths that most likely be different than mine. Simply in the end I needed to take all the information and make a choice just for me and trust it. It was a beautiful lesson for me to trust myself that I would do what is right for me and my family know matter what anybody else thought. I actually feel my soul shines a little brighter through it all with this inner confidence I nurtured-as silly as it may sound.  
 Bottom line-all the options kind of suck.  What is most important to me? Certainty. What would make it certain I would not get ovarian/fallopian tube cancer or breast cancer, have my family see me go through chemo and radiation from these cancers or possibly have it take my life? Have the surgeries. I'm not saying I am safe from getting any other cancer or that "my time" for some other reason might not come along sooner than later but what I know for certain is that I will not be another Brca1 breast /ovarian cancer statistic and for me, my husband, daughter and son that sounds pretty good. 
I know most of you that are following this blog do not share this similar journey but I believe we all have had to go through challenges that has lead to a fork in the road where we have to make some heavy decisions.  All I can say is we all have the answers with in us. Quiet the mind, find peace and listen-then trust the answers.

East and West-Rest is Best

I am a fan of both Eastern and Western medicine and feel there is definitely a place for both in America.  With that said, about 2 1/2 weeks post surgery I visited my ayurvedic/energetic/chiropractic doctor. She reminded me of the stress that a body goes through when having a surgery and how anesthesia can stay in the body weeks after possibly giving me the symptoms I am feeling.  She adjusted me, cleared me and reminded me to rest and honor the healing. I had the worst migraines and felt exhausted for the next 2 days after her treatment but have not had a headache since.  
I saw my surgeon 3 weeks post surgery.  She said my incisions looked good and I am right on track with my healing.  She said that my "brain fuzz", which by the way comes now twice a week or less, is because of exhaustion.  Ask any new mom and they can relate to the loss of thoughts or like me forgetting where the button is on the TV to turn it on.  She said even though I might be sleeping well at night, my body has been through a lot and needs more rest.  Ok- so maybe the light jog I went on last week should have been a walk (or a nap). Oh well- lesson learned.  When a doctor says you can resume "normal" activities, you must remember "normal" is subjective to each any every person.  In the end what I learned from both doctors is that I need to slow down and be patient with the healing.  I won't resume my "normal" activities of kick boxing, running, and swim training. I am taking it easy these days and find walking and just being a mom to a 3 and 5 year old enough movement and energy for me and when I'm really being good I'm in bed by 9:45. 
 I feel that there IS an amount of "leveling out" that a body has to go through while adjusting to the fact it is not producing any estrogen and progesterone and possibly that is contributing to some of my symptoms.  My surgeon tells me that all of the estrogen and progesterone should be out of my body 8 weeks post surgery.  Who knows- maybe it will be a relatively smooth transition.  I feel at peace knowing I have my 2 doctors, that practice 2 very different styles of medicine, available for help if I need it.

Post Surgery 2 1/2 weeks

 There is a lot of spelling that goes on in our house with having a 3 and 5 year old around.  Last week I attempted to spell the word sister to my husband like this - c-i-c-t-e-r.  I repeated it 3 times and began to get frustrated at him for not understanding what I was spelling. Hooray! And so it begins my first symptom of menopause-"brain fog".  The lack of estrogen in my body ( and it being surgically induced rather than gradual probably doesn't help) can create symptoms like this one. I know we have probably all had days or moments like this but in my case it has not left me for a week and happens all through the day.  I find it difficult to connect thoughts, come up with words, and focus.  I sometimes can't remember why I got up to move and my short term memory has suffered too.  I did a little research on this and some claim it to be the result of night sweats and lack of sleep but (knock on wood) I have not had those symptoms-it is simply the lack of estrogen. Thank goodness I don't hold a job that requires me to make important decisions or speeches in front of large groups of people.  It has been comical though and I take it all in stride knowing this too will pass.  Hormone replacement therapy in small doses for a short amount of time is an option. There are also homeopathic remedies that I am actually going to explore first. 
Other physical side effects I have noticed on a smaller scale have been headaches,  feeling a little nauseous and light headed.  I have found that tylenol and something light to eat takes care it.  
Yesterday I started to feel anxious and a little irritable.  I could see it coming on and starting to fill my body and mind. Before I lost my "perspective" on things I knew I needed to do something.  I have been feeling good since my surgery and found if I limit heavy lifting, twisting and bending I feel great. So- I decided to go for a jog. I put on my music and jogged for just over 3 miles.  Besides my achey knees it felt great and seemed to do the trick.  I highly recommend exercise for (everyone) but specifically woman going through menopause.  Here's a link that goes in to the benefits of exercise for menopausal woman. http://www.acefitness.org/fitfacts/fitfacts_display.aspx?itemid=91
Overall recovering from this surgery has not been bad. I find if I listen to my body and respect where it is in the healing process than I am good. It's important to call or email your doctor post surgery for any questions or concerns you may have with healing or your emotions.  It's not always a good idea to go on line and see every symptom that may happen during menopause-it can be over whelming and why put symptoms in your head that you may never get. 
One last note- Not being able to pick up, hug, or play with my kids or climb into a bunk bed to read them a book during my recovery has made it even clearer to me that I made the right decision with this surgery. My recovery has only been 2 or so weeks-having cancer and going through treatments would have been a hell of a lot longer.
More on those thoughts later...:)

Good News

Pathology got back to me -said there was no traces of cancer found! Whooohoo!
The doctor wasn't expecting to find anything with how everything looked inside but Brca patients have to go through pathology to double and triple check because of the chance of microscopic cancer cell growth.
Sigh... I didn't realize the weight that was on my shoulders until I got the good news and it was lifted.


Happy New Year Everyone!  A happy one indeed.


XO

Post Op

I am writing today post op-about 5 1/2 days and doing well.  Its strange looking in the mirror and seeing only 3 little incisions with having a surgery that involves the removal of body parts but am quickly reminded of that reality with the limited movement and lack of energy I have had.  

I went in early on Thursday morning.  Things moved along steady as they checked me in then shuffled me to another room where I found my lovely bed, hat and gown. I was behind a curtain waiting by myself for the nurses to give me my IV and prep me for my surgery.  Doctors and nurses would peak in, smile- I would wave. I realized I was the healthy one on the floor doing a preventative surgery surrounded by sick folks who needed immediate care. That's the way I wanted it though, to be healthy having this surgery rather than waiting.  Alan was by my side as I waved and told him not to worry and what seemed like a second later, I was awake in my post-op bed.  I was surprised how quickly I was then escorted out of the hospital. I was barley awake, couldn't walk, hadn't peed yet and good ole' Kaiser had me out the door. Having a one night stay in the hospital wouldn't have been a bad idea but I was still fine in my own bed. 

The last five to six days has been about pain management, getting the air out of my body that was put into my abdomen for surgery, and moving slower than usual. I feel better everyday which can be deceiving. I was a little over confident and moved the wrong way getting into the van and was reminded in a painful way that my insides were still healing. 

To anyone having this surgery- here's a few pointers:

-Don't get rid of those sanitary napkins yet :)

-The first 2 days just take your pain pills before the pain happens

-Walk when you can, a little more everyday to get the air out

-Stress to your anesthesiologist that you get sick after surgery-they can put something in your IV drip or prescribe a scopolamine patch you put on the day before. (Thanks Doyle)

-Drink lots of water but try to keep your bladder empty-it can be painful when it is full and pushing on tender parts.

- Walk slower than you think you have to for the first week.

So all is good-just waiting to hear back from pathology.  Thanks for all the good wishes, positive thoughts and prayers. 

Top 10

I was talking with my sister the other day about how I bought a Costco value pack of sanitary napkins a while back and with my body being forced into meda-pause after my Oophorectomy/Salpingectomy, I don't know what to do with them. Do you give them away? Throw them away? Save them for when your friend or house guest needs one? My sister, also being BRCA1 positive and has gone through the surgery, starts to tell me how she still uses them to take off nail polish or as a gauze pad.  I thought she was kidding and got a chuckle out of it but she assured me of how useful they can be. Love you Sister!
So there the list was born-
Top 10 uses of Sanitary Napkins after a Oophorectomy/Salpingectomy:

1. Nail polish removal pads-(especially for hard to remove polish)
2. Bandage -(won't stick to the wound)
3. Nursing Pads-(for your nursing friends I suppose)
4. Soaking up spills
5. Cleaning
6. Slippers-(sure to stick to your feet)
7. Insols
8. Shoulder pads-(if and when that style comes back...)
9. Emergency diaper for baby
10. Emergency diaper for yourself...

No- I wasn't the first to think of such a concept.  I stumbled across this video (if you haven't had enough).

http://youtu.be/BnhbrdIewPk

LOOK AWAY!

We've all done it,  looked at the car crash while passing by or just simply looked when you were told to look away. I made the mistake of watching a laparoscopic oophorectomy on line- (a similar surgery that I will have done in 2 1/2 weeks). Who does that -right? Let me explain.  My dear husband was asking questions about my recovery while I found it perfectly fine to wait and ask my surgeon in 3 days during my pre-op appointment.  Aiming to please and understanding his concern I jumped on line like we all do to get our questions answered.  While scrolling through all the information I came to a camera button, hesitated and clicked on it. Before I knew it I was watching the lazer cut away. Yikes- it took my breath away as interesting as it actually was.
My advise-which does seem like a no brainer, don't watch your surgery online before you have it done. We live in a society with so much information at hand given the current technology. We go to the doctor having already diagnosed our self , accurate or not.  Simply, there are just certain things we don't need to know. Trust the process, right down questions that may pop in your head in the week following your pre-op appointment with your surgen so you feel fully informed.
 Ya...some things are better left unknown no matter how concerned loved ones may be. :)