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. :)

Farewell Ovaries

Farewell ovaries and fallopian tubes. You have served me well and have played a large role in giving me two beautiful children but the time has come when we must part.  On December 22nd, I will have laparoscopic surgery to remove my ovaries and fallopian tubes.  I've decided to do this surgery first because of the high percentage of getting ovarian cancer and how it is hard to detect.  I am done with having babies so that part of the decision wasn't difficult for me but I am a little worried about the lack of hormones in my body and how that will affect me after the surgery.  I was thinking I wouldn’t have to deal with menopause for 10 more years from now. My doctor tells me that she can put me on a low dose of hormones short term if necessary.  It is my understanding that post menopausal woman taking estrogen and progestin long term, were at a greater risk of developing breast cancer so short term in low dose is how I would approach it- again if necessary.  

When I first spoke to the oncolagy surgen he recommend me to remove my uterus too.  He said in an abrupt and matter fact tone (and I am paraphrasing), "You don't need it   anyway and since you are so petit and pushed a large baby out, your uterus will most likely be hanging out of your vagina like a penis later in life. Why not have me take it now rather than later."  I just stared at him in disbelief.  I asked him why my mother and sister's surgeon back in Boston recommended me NOT to have my uterus removed being that I have never had uterine bleeding, endometriosis or family history of uterine cancer.  (The Brca1 mutation does not put me at a risk of uterine cancer unless cancer is already found in the fallopian tubes or ovaries.)  His answer was so that the other surgeons could make more money doing two surgeries rather than one, insinuating that eventually I would need my uterus out. Needless to say, I left his office saying to my husband Alan that there is no way that man is doing my surgery. I didn't listen to gut and scheduled the surgery with him after doing a background check. My mother booked her flight from Boston to come and help me and everything was a go. I called to see why I hadn't received my pre-operation appointment and the surgeon’s scheduler nonchalantly said I was not scheduled for the surgery and that he couldn't do the date I asked for after all. I was frustrated, mad and hurt and felt neglected. I gave the scheduler a piece of my mind as she continued to not take any responsibility for dropping the ball.  Moral of the story-if you have a bad feeling about something or someone-follow your gut.

I am now having my gynecologist do the surgery and I feel much better about that. If no cancer is apparent while doing the surgery, which I highly doubt there will be, then I can go home that day. The surgeon sends samples to pathology to check for cancer cells and after a day or so I get the results.

So there it is!  Goodbye tampons, Goodbye Aunt Flo, Goodbye ovaries and tubes- you’ve been good to me but it’s now time to go.

What is Brca1?

A dear friend of mine asked me the other day, “What is Brca1?" I will do my best to explain but keep in mind I am not a specialist in this field so if anyone wants to add or correct any information-please do. I’ll do my best.

Brca stands for Breast Cancer Susceptibility Gene (1) and (2).  Brca1 and Brca2 are human genes that we all have that belong to a class known as tumor suppressors. Ok- stay with me. :)  It’s a “care taker” gene that produces a protein in the cells of breast and other tissues that repairs damaged DNA or destroys the cells if they cannot be repaired.  It helps to prevent uncontrolled cell growth.  If the BRCA gene is mutated or altered, damaged DNA is not repaired or destroyed which increases the risk of cancer.  This “type” of cancer is called Heredity Cancer - being that it is caused by a gene change carried down from parent to child.

 Everyone has two copies of each gene, one from your mother and one from your father.  The Brca mutated gene is inherited from either the mother or Father’s side leaving one good one and one mutated.  The mutation does not mean you will get cancer but GREATLY increases the odds.  It also does not affect every kind of cancer but primarily breast, fallopian tubes, ovaries and prostate in men. There are other cancers it affects on a smaller scale.  If interested you can read more about this gene in detail from the link I have attached.

With out going into greater detail and confusing myself, and probably others, I will leave it as is. With knowledge comes responsibility. Next I will share what my plans are and how I’m dealing with all this knowledge and emotion brewing in my head.

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

Blood and Guts

My name is Sharon and I am 40 yrs old. I am a mother of a 3yr and 5 yr old and a wife to an amazing man. I am blessed.  About 10 months ago I found out that I was positive for having an alteration in my Brca1 gene. As a result I have an up to 87% chance of developing breast cancer and between a 50- 60% chance of developing ovarian cancer. (These are the stats I just recently received.) I decided to get tested after hearing of my mother being positive for Brca1.  She is a breast cancer survivor,  her mother had passed away from breast cancer and there were a few cousins and aunts who also had cancer. Understanding our family history, the Doctors agreed to the test.  Its a simple blood test and then a waiting game where they then send it off to a special lab to get it analyzed.  My Aunt, who was tested negative, said, "It takes Blood and Guts- Your blood for the test and the guts to have it done." After waiting about 2 weeks and trying not to think about it,  I went to my appointment to hear the results. I don't recommend going to this appointment alone. There was a lot of information to take in and it would have been nice to have the support and extra set of ears to absorb what was being said and what was ahead.
Bottom line- if you are thinking you might want to get tested then bring it up with your doctor. If they don't think it is necessary and you still feel in your Gut you want to have the test you can always play the "emotional" card, how it is causing you stress, loss of sleep not knowing etc... It is an expensive test-rather have the insurance company pay for it.
 If you get tested and you're negative then it is one less thing to worry about. If you are positive the doctors will watch you like a hawk. Don't worry about making any decisions-everyone has a different situation, "journey" I like to say. This is just mine.
More to come.