She's Back...

Ah...my inner bitch has emerged from her coma.  I found her!  Ok, well maybe just hints of her.

I'm feeling more like myself each day.  I don't know if my body is adjusting to the lack of hormones or if it is because I'm starting to feel a little better.  I was all girly emotions and cry-baby tears for the past two and a half weeks.  The past two days I have been having mood swings and the bitchy side of me has surfaced some.  My husband and boys probably aren't as happy about that as I am but I feel a little more like myself when I get upset that my teen didn't clean up after himself and not cry about it while feeling helpless.

Yesterday I decided to leave the house for a while.  I'm planning on going back to work Monday so I figured it was time to get out and see what my body will let me do.  I went to my teen's open house at school.  Today I'm paying for it.  I walked a little and sat up for about two hours at the school.  My ab muscles are killing me today.  It feels like I did 500 crunches yesterday.  Today I have decided its a couch kind of day.  Just resting.  I'm a little scared about going back to work knowing I'm not truly ready but I have to.  Hospital bills will start rolling in soon and I'm not getting paid to be off work.  Kind of sucks knowing I have to push my body instead of taking the appropriate time to heal.

Here it is 17 days post-op.  I'm feeling ok.  I have had some pretty bad days and some that aren't so bad.  I know there will be a time that I look back and think it wasn't that bad.  I'm looking forward to that time.  Its amazing what we allow ourselves to forget.  Unfortunately the short term memory fuzziness from menopause isn't helping with that yet.  I'm hoping getting back on track with some supplements will help though.

There is a lot of research going on about what supplements will help decrease your risks of cancer.  While we all wish there was a perfect cocktail of natural supplement tablets we could take, it just hasn't been found yet.  I do take 2000iu of vitamin D3 daily which has been found to decrease breast cancer risk, decrease risk of osteoporosis and boost immunities.  All three are beneficial for me!  Who doesn't want a stronger immune system and lower risk of breast cancer?  With me the osteoporosis is an issue.  I don't have natural estrogen anymore and that impacts bone health.  It also increases my risk for heart disease.  Everything comes with a price, right?  Unfortunately it seems so.  I don't have a family history of heart disease or osteoporosis but taking precautions are important.  Vitamin D is absorbed through our skin from the sun.  No, sitting by a window doesn't work and the amount of sun exposure needed to get the right amount of vitamin D isn't feasible for most of us.  Getting your levels checked is a simple blood test at the doctor's office.  Its worth having a look for most of us because more people are deficient than you think.

There are other things we can do to reduce our risk of breast cancer which includes breastfeeding.  Ah, one of my favorite topics and one I feel very strongly about.  I love breastfeeding.  Every single minute is a gift to both the baby and the mother.  The time I have spent breastfeeding my children is precious and only I have that bond with them.  Did I breastfeed because it reduces my risk? No. I did it because my mom told me I should and once I started I realized how much easier it was than warming bottles of stinky formula at 2 am.  Oh yeah, lots of other benefits as well but most of us know those benefits and I don't need to repeat it here.  The ease sold me, the bond got me through the hard times and the benefits made me passionate about it.

That's it for today.  I can't tell if its hot flashes or the heat from the MacBook so its time to turn on the fan again.  Thank goodness for remote control fans, ACs and electronics.

Two Weeks Post Op

Surgery was Monday.  Wow that was a crazy day!

Aunt Flo decided to make one last appearance.  I started spotting around 11 AM.  Irony at its finest.  Well, Aunt Flo was about to get a nice little surprise.

I arrived at the hospital at 12:30 pm and checked in.  We found a seat and waited for a minute before I see Dr R go to the desk.  Turns out he was running ahead of schedule and wanted me in surgery early.  I was rushed back to pre-op.  Usually pre-op takes a while.  You get undressed, give a urine sample, wait for the nurse to start an IV and talk to all of the doctors/nurses that will be with you during surgery.  That process takes about a 1 1/2 hours or more.  They prepped me in a little over 15 minutes.  It was so fast paced I didn't have time to get nervous.  I have no complaints about getting in sooner.  It was nice to be too busy to think.  My family got to come back for a few minutes before I was wheeled to surgery.

I met "Robbie the Robot" and the rest of the staff in the operating room.  Everyone was very nice and introduced themselves to me while prepping.  I move to the operating table and get some oxygen through a mask.  I knew when it changed from oxygen to whatever gas you breathe to knock you out.  The nurse said, "Think of your favorite place to be" and I was out.

Anesthesia is an odd experience.  I've had my fair share of surgeries so its not new to me but it is still an odd feeling to lose that time.  Its not like going to sleep and waking up knowing time has passed.  It feels like you blink and everything is different.  The only comparison is passing out or fainting.

My husband, Donnie said Dr R came out around 3:45 pm to talk to them.  Surgery lasted about 2 1/2 hours and everything went perfectly.  He didn't see anything that would indicate a malignancy but we would have to wait for the final pathology report to know for sure.

I woke up in post-op about 6:30 pm.  The pain was excruciating and my tummy felt like it was going to blow contents from the previous week.  It took a little while to get the nausea and pain under control.  I was given large amounts of Zofran, Phenergan, Dilaudid and Morphine.  If you know me you know how much I hate pain meds.  I was welcoming the meds this time.  The pain was pretty bad.  Da Vinci surgery is supposed to be easier but it has been by far the hardest surgery I have had.  Recovery may be less but waking up in that much pain was horrible.

They let Donnie come back once my pain and nausea was under control.  It was about 7 pm and I was waiting to be wheeled to my room.

Donnie told me my cath bag had blue urine in it.  I was pretty out of it from the meds so it didn't quite register so he took a picture to show me.

During the Cystoscopy they fill you with blue dye to check for leaks or damage to the bladder.  Then they leave this lovely catheter in until you start running clear again.

I got to my room around 7:15 PM.  I was still really out of it from the pain meds and I'm sure the boys that transported me to my room had a good laugh at my expense.  I vaguely remember telling them that I was going to be nice and let them move me to my bed without any help from me.  Moving was not an option for my body at that moment.  Breathing was hard enough.

While my nurse was working on me and the nurses aid was getting me situated I was in and out.  The nurse handed me the morphine button and explained that I have a constant morphine drip but I could push the button every 10 minutes to give myself a boost of morphine.  I hit the button and passed out for a few minutes.

Donnie and our youngest son, Ash come into the room.  They had left to get some dinner since Ash wasn't allowed back in post-op.  I'm not sure why I felt like they had been gone for hours because in reality they were only gone for about 45 minutes.  I remember being very mad at Donnie for leaving the hospital and telling him numerous times.  He was a trooper and told me how sorry he was.  Then he recorded a little video of me going in and out of a morphine coma.  I was not aware of this video until a few days after surgery.  Wow I was out of it!!

A little time passed with me pushing my morphine button every 10-15 minutes and falling asleep.  I was so thirsty I drank a ton of water and Sprite.  I tried eating some crackers but my mouth was so dry I couldn't swallow them.  Saltines feel like cement in your mouth after surgery.

Around 10 PM my nurse came in with my abdominal binder and asked if I could get out of bed for a short walk.  No I didn't want to but I know getting up and walking would keep me from getting so stiff.  I also knew I wasn't getting that binder until I got out of bed and I wanted that binder BAD.

I walked down the hall with the nurse on one side and Donnie on the other.  I felt extremely weak and light headed.  The catheter was very irritating.  I've had plenty before and was never bothered by them but this one was horrible.  I was having spasms in my bladder and the cath wasn't draining properly so I had a horrible urge to pee almost constantly.  The nurse would come in, move the cath around, put the bag flat on the floor and try to encourage it to drain.  We did that several times throughout the night.

Donnie and Ash left around 11:00 PM to pick up my oldest son, Trent.  He stayed at the hospital all night with me.  It was nice to have some alone time with my oldest.  He has a big heart even though he drives me crazy sometimes.  I think its a requirement of a teen to drive their parents crazy.

The nurse came back in around 1 AM and asked if I felt like walking a little more.  Trent helped me up to walk and we took a wheelchair for me to hold on to.  This time was a little easier but I wore out quicker and felt extremely nauseous after just a minute or two.

Back to bed with my morphine button and some nausea meds.  I slept pretty good for a few hours.

The nurse came in about 4:45 AM and removed the catheter.  I was so happy to see that thing go!  I was still having quite a bit of pain but decided I wasn't hitting that button again because I wanted to go home.  I was still getting a steady drip of morphine but I wasn't using the boosts.  I got up to pee a few times with help from the nurse and Trent.  Apparently I was answering work emails but I honestly didn't remember doing it.

Donnie and Ash got to the hospital around 7:30 AM while they were taking my beloved pain meds off.  They kept the IV in but no more meds going in.  I got up to take another short walk and did better this time.  I was feeling pretty good compared to the day before.

Dr R came in shortly after to tell me about the surgery and asked if I wanted to go home.  He ordered my estrogen patch after I told him how emotional I had been.  The nurse came in to put the patch on a little while later and I got up to urinate.  I had to produce a certain amount of urine before I could be released.  Peeing is a challenge.  I'm not sure if the Cystoscopy caused it or its the swelling but I almost have to retrain my bladder to release urine.

My belly was pretty swollen that morning.

A little while later the nurse came in with my discharge instructions.  Usually I get a page or two but this packet is 23 pages long.  We read through it together and I signed my discharge paperwork.  IV came out and off we go about 11:30 AM.

The binder made the ride home a little more bearable but it was still horrible.  Every bump felt like knives twisting inside me.  Donnie got me situated on the couch and I took a nap while he filled my prescriptions.  Other than the cloudy brain and emotions I was doing ok that day.

The following day was Wednesday.  Not a good day for me.  I woke up stiff and couldn't get out of bed by myself.  The nausea was horrible as well.  I slept as much as I could and drank a lot of fluids.  I took a very quick shower with the help of a friend.  I was still covered in iodine and was itching pretty bad.

Thursday came and I felt a little better.  Parts of my body hurt that I didn't even think possible but it was more of a soreness than pain.  The nurse called from Dr R's office and had my pathology report in hand.  All clear.  No malignancies and no abnormal cells.  Perfect Path Report! YAY!

Each day has been a different experience.  Some days I feel like I'm progressing and some days I feel like I have taken a step back.

4 days post-op

6 days post-op still very swollen

9 days post-op swelling subsiding

I saw Dr R on Thursday for my follow up appointment.  We discussed the pain I'm still having and some of the issues I'm having.  All is normal.  He said it could take up to a year before I'm feeling back to normal.  He removed the steristrips and all the incisions look great but one.  He had to glue that one a tad and put a bandaid on it because it wasn't closed completely.

11 days post-op

It has been two weeks today.  I truly thought I would feel much better than I do.  I took my binder off and haven't been wearing it the past few days.  At first it hurt but now that I'm getting used to it being gone it seems better.  I have a few internal stitches poking out.  I always seem to have issues with that.  My body just doesn't like them in there I guess.

14 days post op

the top incision that didn't close now healing nicely below a previous surgery scar

right side incisions that internal stitches are working out

some tape burn, my old appendectomy scar and scar above from gallbladder removal

I've come to the conclusion that my tummy is going to be a road map of stretch marks and surgery scars.  I'm ok with it though.  My first surgery made me worry about scars but I'm over it now.  My scars show what I've been through.  This surgery created less scars than what it could have.  While the outside doesn't look that bad the inside is the same surgery.  That was hard for me to understand at first.  I really thought it would be easier than it has been but I'm slowly getting better.  

My wonderful husband has been the nurse, the mommy and the daddy.  I feel for him taking care of three children and me.  He has done things for me that I never thought I'd ask of him.  So much for modesty here.  A man that will hold his wife while she cries in pain from constipation is a great man indeed.  

That's one thing I wasn't prepared for.  Constipation is a bad thing after surgery.  My doctor explained it to me that the bowel is settling into its new home and the anesthesia and pain meds can cause it.  I received specific instructions for bowel care after surgery.  I followed them to a T and it still happened. I was so scared that I was going to end up back on the OR table with a bowel obstruction.  I swore I would never drink Miralax again after that nasty bowel prep before surgery but here I am calling it my savior.  For any woman preparing for this surgery...keep some Miralax on hand for these issues because it will very likely happen and it hurts.

The emotional aspect of this surgery is draining as well.  I honestly thought hot flashes and night sweats would be my big issues but no.  Its the emotions.  I have always been a little bitchy.  A tough girl and tomboy hanging with the boys.  Take out my female parts and my female hormones and BAM...I'm a girl with girly emotions and crying about everything.  What happened to me?  Even my new improved "ovary" isn't helping that part.  

My "ovary" HRT patch

I have to keep tissues around because I cry watching movies now.  I have also had some issues with grieving my uterus.  The womb that carried all my babies is gone.  Knowing I can't have more children doesn't bother me as much as I thought it would.  Its that my safe, warm womb that my children grew into strong little boys in is gone.  It was dissected and scrutinized under a microscope then incinerated with all the other medical waste.  The thing that held my babies was trash.  My ovaries are gone too and I don't mind.  Talk about irony, right!?  Yes, my children started as eggs that came from those ovaries but those ovaries are scary.  They have a high chance of killing me.  Murderous little bastards can kiss my hormone patch wearing butt.  Glad they are gone.  (Yep, I'm menopausal and a tad crazy)

So, that's my recap from the past two weeks.  Its full of ups and downs, emotions and some pain but do I regret it?  Not one bit.  I know in my heart that this is the right decision for me.  Did the path report show those as healthy parts?  Yes.  Do I consider them healthy? Hell no!  Did I have a surgery to remove healthy parts? Nope.  I had a surgery to reduce my risk of an extremely aggressive cancer that is hard to monitor and catch early.  I did this for my children because I don't want them going through what I went through with my mom.  No I don't want to go through what she went through either but all-in-all it is my family that needed me to do this.  Do the boys understand that?  No.  Will they ever understand that completely?  I hope not!  

Disclaimer:  I support herbal supplements, homeopathic medicine, exercise and diet to aid in treating medical conditions but in no way feel those can take place of modern medicine.  This is my opinion that I have come to through my research and my team of doctors that I trust wholeheartedly.  I did not make these decisions without looking at alternatives and discussing these options with my team of medical professionals and my family.  With that being said, support me or don't but don't bash me for the decisions I have made unless you have walked a mile in my shoes.  Please be aware of your remarks to other women that might be in my shoes because it is hurtful to be put down for doing what we feel is right for us and our families.  

3 days and counting

I'm down to 3 days until surgery.  Dealing with my last day at work for several weeks.  I'm emotionally drained.  The nerves and anxiety are finally getting to me.  I'm starting to think I won't be having that last period I was expected.  I guess the nerves messed that up. 

I have to do a bowel prep prior to surgery.  I'm not looking forward to this at all.  I have a condition called emetophobia.  It is the fear of vomit, vomiting, and anything to do with vomit.  The thought of forcing some nasty drink down my throat makes me gag and kicks the fear of puking into high gear.  Yes, I know nobody likes throwing up but I have a full blown anxiety attack.  Laugh it up.  Its about as funny as my big, strong police officer husband being scared of a little spider.

Yesterday I met with my oncologist's surgery nurse to go over my pre-op and post-op instructions.  There are some things I would rather not know but thanks to our government, everything has to be disclosed and understood by the patient.  I didn't need to know that the doctor will be filling my abdomen with a liquid then sucking it out to go to pathology. 

I also had my blood work done for the hospital yesterday.  I am not scared of needles nor does having my blood drawn ever bother me.  However, this woman tore me up.  I have never had a blood draw hurt me this bad and I let someone stick me for their certification test.  (Love you, Crystal) 

Am I ready for surgery? No way.  I feel like I have so much left to do at home.  There is so much cleaning to still do and laundry that needs done.  I guess it will all be there when I'm feeling better. 

Some people have asked to visit me in the hospital.  Please don't take offense but I don't usually like visitors in the hospital.  I have to keep up the tough girl facade.  There are only a few people that I allow to see me when I'm not feeling well.  I appreciate all the people that do want to see me though.  I really do!  Right after surgery I will be on lots of pain meds and probably won't remember the people that are there anyway.  When I get home and feel well enough for company, all of you will know.  I will probably be asking for people to come hang out with me then.

These last few days are either going to fly by or seem twice as long.  I'm ready to get this overwith and be on the recovery side.  I've always said the anxiety before a surgery is the worst part.  You get yourself all worked up to find out it usually isn't as bad as you think it will be.

Wish me luck everyone.

PreSurgery Planning

I'm a planner.  I haven't always been but I've learned planning is easier when you have three boys and a husband that works different shifts throughout the week.  Do my plans always workout? Heck no! Do my plans ever go perfectly.  Yeah right!  Planning makes me feel better though.  At least I have a mental list or schedule to work with.

This weekend has been dedicated to planning for surgery.  I'm making my list of things to take to the hospital, my grocery list for the weekend before surgery and a list of the things I have to get done before surgery.  Laugh away...my list does include take off fingernail polish before surgery.  That's one thing I'm really scared I will forget while making sure I have everything else done.

I have been cooking all day and freezing meals so my family will have healthy meals that require little effort on my husband's part.  Although he is a decent cook he is more of a "box cook."  This is a person that cooks really well out of a box with instructions.  I am a "throw it together and hope it turns out good" cook.  I don't use recipes and if I do it's always altered with my own touch.

I have three meals done and in the freezer and three more in the works right now.  By the end of today I should have 8 meals in the freezer that only require thawing/heating or being put in the crockpot.  I labeled each freezer bag with today's date and instructions on how to cook the contents.  I wanted to make it as easy as possible because I would rather his energy be spent on taking care of the kids and letting me rest.

I have also been preparing for menopause.  I bought a portable AC unit.  No its not portable as in carry it with you everywhere you go.  It is portable throughout the house.  That way if I decide the couch is more comfortable at night I can take my AC in there.  Yes, we have central air conditioning but our main level is on the second floor of our house.  On hot days it just doesn't cool properly.  I don't want to be hot after surgery and dealing with hot flashes too.

OK, maybe I over plan sometimes.  In my defense, I keep this family together.  My husband, Donnie is great.  He is our protector, our strength, the Daddy and the man of the house but he is not a planner.  I guess that is why we work.

I am a control freak.  Maybe a little OCD about it.  No I'm not one of those "everything has to be spotless" kind of OCD people.  I have to have control of things.  Going in for surgery not knowing what I'm going to wake up to is out of my control.  That bothers me.  I'm keeping myself busy by planning everything I can and taking control of as much as possible so I don't go crazy thinking about what I can't control.

I haven't talked much about my feelings yet.  I'm scared but not scared of surgery.  I've been there, done that and deserve a t-shirt for it.  Surgery doesn't scare me anymore.  I'm scared of what answers I'm going to get after surgery.  Knowing my right ovary is enlarged is scary.  My mom had ovarian cancer as most of you know.  There is always a chance that I waited too long to have this surgery.  That scares me.  We are hoping and praying that everything comes out ok and my oncologist is very hopeful.  I keep thinking the surgery couldn't come fast enough.  I feel like as I sit here my chances of ending up with ovarian cancer get worse and worse.  I can't get these silent killers out of me fast enough.

I'm a little overdramatic but I can't help but feel this way lately.  I went to the doctor because I have been having pain in my lower right side, extremely tired all the time, cramping during periods has gotten really bad and I feel bloated all the time.  Those are all early signs of ovarian cancer so my doctor ran tests and did the ultrasound.  Finding out that the right side is enlarged just made my worries even more realistic.  This is also why the doctors don't want me to wait to have the surgery.  The sooner its out the better even if everything comes back clear.

Donnie won't admit he is scared much but I know he is.  Testosterone seems to make men think emotions are a weakness.  I get it.  Men are supposed to be strong and go out to kill dinner.  I am happy to have that strong man that would wrestle a mountain lion for his family but I need him to confide in me too.  I don't like sappy men that cry.  My dad taught me to love a man that is strong.  Some women like men that show their emotions and shower them with flowers and presents.  I'm happy to have a man that buys me a gun for Mother's Day and takes me out shooting at the range for a date.  My dad also taught me a girl can do anything a boy can do and sometimes better.

I'm having a shirt made for my big strong man to wear for my surgery.  Teal shirt with pink lettering that says...

My wife is a

BRCA Mutant Warrior

He will wear it proudly because he loves me and is behind me 100% during this journey.  Its also paybacks for my "My husband is a police officer" shirts I get to wear.  I wear it because I am proud of my husband.  Not only does he protect us he protects others.  

Back to cooking now.  Then the cleanup begins.  Did I mention I hate cleaning?

Doctors, Tests and Sex

Lately I feel like I am working in the medical field.  I have been in constant contact with doctors, nurses and hospital staff for over a week now.  I have two more appointments next week then surgery the following week.  I feel like I am running on steam.

First week of school and I have missed so much already.  I'm drained in the morning so I'm running on autopilot to get my middle schooler off to the bus stop and get ready for work myself.  I'm so wore out at the end of the day all I want to do is lay in bed and be lazy.

Enough self pity...My husband is taking me out tonight.  Let's say its my last HOORAH before a weekend full of meal planning, cooking and freezing for after surgery.  After that I have four days of work and a weekend full of anxiety and cleaning.  I hate to come home to a cluttered house when I can't do anything about it so we are on a mission to clean top to bottom before surgery.  Three boys live here so that isn't an easy task.

Just got off the phone with Pre-Admission to go through my health history.  I always have to go through my list of surgeries even though all of my surgeries were at the same hospital and they have the records.  I always wonder why they don't just look it up.

I go back to see my oncologist next week before surgery and have to go to Pre-Admin Testing for blood work.  Again, why are you typing my blood if you have all my records?  I'm pretty sure I'm still A+ just like the last 20 times you have typed my blood.

My sarcasm and irritability come out more when I'm upset...can you tell?

As I promised in the title of this post, we are going to talk about sex.  Well, the lack thereof actually.  No sex for 8-10 weeks after surgery.  Hmm...doesn't sound like fun huh?

I'm sure the first few weeks I won't want anything to do with sex but what about after?  Even when I'm back to a normal routine will the medical menopause hinder my drive?  Menopause can run havoc on a woman's sex drive.  Some women say they don't see much of a difference but can I be so lucky?

I sure wasn't lucky finding out that I have a BRCA1 mutation.  Yep, I'm a mutant.  No super powers, darn.

Most of the studies I have seen show a 1% chance of being BRCA1 or BRCA2 positive in non-Jewish ethnicities.  You have a better chance of winning the lottery than being BRCA positive.  If one of your parents have a BRCA mutation you will have a 50% chance.  Know your family history.  If you don't know, ask.  If anyone in your family has had breast or ovarian cancer, ask them if they were tested for genetic mutations.  If so, get the results and tell your doctor.  A person can't have a genetic mutation if neither of their parents have it.

Each of my children have a 50% chance of being BRCA positive.  Someone was looking out for me by giving me three boys.  I always wanted a girl at some point but men have less risk with the mutation.  For one, there is less breast tissue and they don't have ovaries.  The risk of prostate cancer does increase in men carrying BRCA1 mutations.  Men carrying the mutation have a 16% chance of prostate cancer by age 70.  Whereas, a woman with BRCA1 mutation carries an 87% chance of developing breast cancer.  This is a lifetime risk but BRCA breast cancers are usually at a younger age than other hereditary breast cancers.  My risk of ovarian with the mutation I have is 65%.

The mutation creates nonsense in the DNA sequence.  Mine is 3604delA which means in the 6000 nucleotides composing the BRCA1 gene at position 3604 I am missing A.  Everything after that is based on misread information because something is missing.  What does this mean?

It means my body can't repair damaged DNA as easily as someone without the mutation because my BRCA gene that produces tumor suppressor proteins doesn't function properly.  In a nutshell, my cells are likely to develop more genetic alterations that can lead to cancer.

This is all information a genetic counselor can explain to you.

Off I go for a night with my husband.  Our last date night for the next month or so.

Synchronicity

Synchronicity is the experience of two or more events as meaningfully related, whereas they are unlikely to be causally related. "A Wink from the Cosmos"

I received a call yesterday around 4:30 pm from my oncologist's office.  Mary, the surgery scheduler was calling to schedule my surgery.  She asks if September 9th is ok.  I scream in my head, "That's too soon!" but oblige and write the date on a Post-It note at my desk.  

After writing down the date, I look at it and realize what day it is.  Its the day my mom lost her battle with ovarian cancer.  On September 9, 2013 my mom will have been missed for 16 years.  She will have missed 16 birthdays, Thanksgivings, Christmases, Anniversaries and Mother's Days.  We will have missed 5,840 days of having her here on this planet with us.  

I heard very little of the conversation with Mary.  I traced that date on my pale yellow Post-It note until it wasn't legible then wrote it on another to start the process again.  I ended up catching the time of surgery before hanging up and dialing my sister, Missy.  I tried to play it cool since I was in the office and surrounded by coworkers but as soon as Missy asked me if I knew what day it was, I completely lost it.  Self control was out the proverbial window.

When you lose someone close, you will hear "I'm sorry" about a billion times.  Although I know some people mean it, I get tired of hearing it.  Sometimes I want to say, "What are you sorry for? The fact that I lost someone that means more to me than you do or are you sorry that you mentioned it and you don't know what else to say?"

Then there's the "it gets easier" comment.  No it doesn't!  You learn to hide it or to go on with your life without that person but the loss never gets easier.  Some days go without a hitch but every holiday, birthday, or special occasion you will be reminded of the person that is missing in your life.  Sometimes for no reason you will wish you could rewind and do something different to make the short time you had even more special.  You will think about the arguments you had and wish you could take them all back.  You will wish you chose that person to spend Friday night with instead of ditching them for your friends.  You will cherish the moments that you had and remember the little things that seemed so menial at the time.  

Our wedding day was one of those special times that I wished my mother could have been present for.  In a way she was.  I incorporated a few details that most people wouldn't have noticed.  The people that knew her and loved her knew the symbolism of those details and that is what mattered to me.

My thoughts on having this surgery knowing what that day was 16 years ago? Everything happens for a reason and I have an angel watching over me.  

iPeriod, I will miss you.

For years I've tracked my periods through an app on my iPhone.  Thank you to whomever created this app.  It predicts even the most unpredictable cycles and gives you a sense of security knowing you won't have one of "those" embarrassing accidents we have all come to know and HATE.  I've never had regular periods or so I thought.  I just don't know how to track a 35 day cycle one month and a 26 day cycle the next month to predict my period.  Over the years I have come to love my trusty iPeriod.  Today I got my 7 day reminder.  (yep, now you all know my cycle)  I usually dismiss the reminder and think nothing of it for a few days.  This time was different.  I realized that this could be my last period EVER.  I don't know why I am mourning my period.  I have always hated it but over the years it has been a part of me.  So it got me thinking, will I cherish my last period for all the gross, crampy glory that it is? Or will I hate this last one just as much as I hated all the others?

If you didn't realize I said "this COULD be my last period."

I saw my oncologist, Dr. R, today.  What an amazing appointment!  I left feeling a sense of security I didn't feel before.

My sister went with me to the appointment.  I wasn't ready to face the Women's Cancer Center alone.  Luckily, I can always count on her support.  Blood doesn't make you family but love does!

Dr. R spent lots of time with us explaining my risks and benefits.  We discussed my scheduled surgery and the chances of a second surgery.  Even though it is a small chance, it isn't a chance I am willing to take.  The pathology that would be ran with a routine surgery just won't cut it in my situation.  My right ovary is enlarged and has follicles.  He said the entire ovary should be dissected and 100-150 slides ran in pathology.  What that means is...they will take out my ovary, cut it into slivers and look at the slivers of ovary through a microscope to check for cancer cells, pre-cancerous cells or abnormalities.  With routine surgery through a gynecologist they run about 15 slides AFTER surgery for BRCA positive patients.  What that means for me...if one of the 15 slides comes back with anything I will be back in surgery with Dr. R anyway.  And that means decision time for me.  Do I want to take a chance of a second surgery or them potentially missing something because the section of ovary they chose for pathology is a good part and not a bad part?

Pathology will be ran in the hospital while I am in surgery.  Yep, while I am asleep under "Robbie the Robot" they are going to run pathology.  Then if anything does come back bad Dr. R can remove more of the surrounding tissue until I'm clear or as clear as we can get, worst case scenario.  One surgery with Dr. R and "Robbie" and I will be done.

A co-worker nicknamed the Surgical Robotics machine Robbie the Robot and no matter what I do I can't get it out of my head.  I keep thinking my 11 year old would want to become a surgeon when he sees this machine.  Its the ultimate 3D video game experience.  For those of you that don't know about surgical robotics, get ready to be impressed.

Recovery time COULD be lessened but the ability to get more with a higher level of precision is a huge plus.  Dr. R performed three radical hysterectomies using the Da Vinci yesterday and all three of the patients are going home today.  I hate hospitals so that is great news for me.

All-in-all I am happy with the decision to let my oncologist do the surgery because he does this more often than Dr. P.  Love Dr. P to death but when your life is on the line you want experience.  To your surprise, I'm sure (insert sarcastic eye roll), there is a large amount of human error in surgery.  Most of those errors can be fixed with no ill effects but one small piece of tissue left in my body could mean my death.  My mom's doctor left one ovary during her hysterectomy and that is the one that killed her.  I'm not willing to risk it.  Ovaries aren't the only thing that can be affected by ovarian cancer.  The blood vessels connected to the ovary and surrounding tissue are all susceptible.  Why take the chance?  Dr. R is taking it all out.

We talked more about hormone replacement therapy (HRT) and the benefits vs risk.  Studies are so inconclusive that doctors shy away from it for BRCA positive patients. Many doctors say no hormone replacement therapy because if a woman ends up with breast cancer 15 years later, the recommendation for HRT can't bite them in the white coated ass.  I've done my research on this and was highly impressed when Dr. R was reciting statistics from studies I have read.  The problem is all the studies done are on postmenopausal women or a small case study that isn't a big enough sample to make much difference.  20 years from now there will be a huge medical "told you so" from one side and the other side will be hanging their heads in shame.  At this point, we don't really know what the long term risk is.  

I think I have decided to start on a low dose, estrogen only patch for a few months and slowly wean off of the hormones completely.  There are benefits and risks with either and becomes a personal decision for the patient.  Quality of life is a big part of that decision.  I am removing most of my chance of ovarian cancer but if I'm miserable and don't feel like myself, is the surgery successful?  The good thing about HRT is it isn't set in stone.  I can try it one way, switch and then switch back if one isn't working for me.

Today's appointment was great.  I got lots of answers to questions I have and made some big decisions that I feel are right for me.  I cancelled my surgery with Dr. P and I'm waiting for the call to schedule my surgery with Dr. R.  I feel like I'm making lots of progress so far.  I'm not as scared as I thought I would be while planning a surgery and talking about cancer so often.  I have a great family supporting me and helping me through this.  I'm not sure I could be so strong without them.

Sex Ed via Google Images

I woke up late after staying up with a toddler that refused to sleep.  While I was drying my hair I missed the call from my doctor's office.  Of course!  That's how Mondays go.  So I rush to call back hoping it wasn't bad news.  I waited on hold for the nurse for 8 minutes and 5 seconds and finished getting ready for work as my body shook uncontrollably.  Calls from doctors scare me.  With the gene mutation and a touch of hypochondria, you automatically think the worst.  Turns out it wasn't that bad.  All my tests came back in the "normal range".  The kicker is (insert dunt, dunt, DUH) the doctor doesn't want me to wait to schedule the hysterectomy.  I am transferred over to the Surgery Scheduler, Gayle.  At least I didn't have to hold for long this time.

Gayle asked me if September 18th is good for me.  In my head I sarcastically said, "No, no day is good for me" as I write the date and time on an old receipt laying in the console of my car.  She gives me the date and time for my follow up appointment and tells me the hospital will be calling me to come in for blood work soon.  Then she gives me my surgery instructions.  You know, the "don't eat, drink, smoke, have sex, take any medicine or anything else that may make you less likely to freak out that you are having surgery tomorrow" instructions.

I asked her to read me the order to make sure it was what Dr. P and I discussed.  Ovaries...check, Fallopian Tubes...check, Uterus...check, Cervix...check.  Yep its all going! To my husband's dismay of course.  He didn't realize my cervix was coming out too.  I think it shocked him a little.  (I mentioned this blog is uncensored right)  

My husband and I had a little talk about what my female anatomy will be like after surgery.  Being the nursing school drop out that I am, I brought out Google Images and broke it down for him.  Google can do so many things for you, even give Sex Ed classes in the comfort of your own bedroom.  Here's an example of the different types of hysterectomy performed.

I am having a "radical hysterectomy" which means the only thing I will have left of my reproductive organs is the vagina.  OK, for those boys reading...I know not something you want to hear about, right!? Well, here's the good part.  No periods, no worries about accidental pregnancy and no PMS eventually.  Just a year's worth of PMS in the beginning called Menopause.

All of this and it was just hitting 8:30 am.

Now my work day begins and I have to tell my managers about being off work for 4-6 weeks.  I had talked to them about it last week but I was under the impression that the surgery would be a few months away instead of 3 weeks.  I'm not sure I got the response I wanted.  I asked about FMLA and got two different answers.  I'm praying that the second answer from our interim HR person is the correct one and I will receive FMLA for my time off.  Lots of stuff still up in the air but I'm one step closer on my journey.

I requested the paperwork to be mailed to close my annuity as well today.  That just down right sucks.  There goes that portion of my retirement.  I don't think I will ever get to retire.  After all the penalties I have to pay to close it early plus the taxes I have to pay on the income I'm left with about 60% of what I have in it.  It should cover my wages while I'm off work but will do nothing to help with the medical bills that will swarm my mailbox soon.  We won't even get into the health insurance debate.

I see my oncologist tomorrow.  I am not looking forward to that at all.  Not sure how it is going to feel in an office full of cancer patients.  I took my mom to a lot of her appointments during her battle so I purposely stay away from those places now.  I don't visit people in hospitals for this same reason.  Those are memories I would rather leave deep inside where I have buried them.

Surgery #1...23 days and counting.

The beginning of my journey

Here it goes...
My first blog EVER.  I want to document my journey and hope that I can help other women going through this.  First I will warn you that writing was never my strength.  Please excuse me for that.  I plan on posting pictures of my journey as well so please keep that in mind.

I started this journey 4 years ago at my 6 week postpartum appointment.  My OB/GYN suggested I take a simple blood test because of my family history.  My mother lost her battle with ovarian cancer when I was 17 and my aunt was battling a breast cancer relapse at the time.  I had just had my third son, had a emergency open appendectomy 5 days postpartum and had my gallbladder removed 2 weeks postpartum...what was another stick with a needle?! Little did I know, that blood test would change my life forever.

A baby and two surgeries later

I got the call at work about a week later.  I knew something was wrong when the doctor was on the other end of the line instead of a nurse.  He gave me the news and the statistics.  He wanted me to schedule a hysterectomy immediately and seek out a surgeon that would do the prophylactic bilateral mastectomy.  Wow that was a lot of news to get at work.  My brain shut down and all I could do was cry.  I had this tiny baby and had just returned to work after a birth and two surgeries.  I didn't want anything to do with hospitals or doctors at that moment.

A few weeks went by while I tried to forget this information and get back into the swing of things with a new baby.  I processed the information slowly and had break downs many times while alone.  Breastfeeding was more important to me than pushing to have the surgeries so I put it all on the back burner.

A few months later I developed a lump in my right breast.  I called my family doctor and got in right away.  He ordered a mammogram and breast ultrasound.  My tests came back ok.  I had a cyst in my milk duct but it would go away on its own.  The reality of the gene mutation hit me and I knew I couldn't ignore this.  I started getting mammos and ultrasounds every year from that point on.

I knew I wasn't ready to move forward with the surgeries yet but at least I was being proactive and getting tests regularly.  I couldn't imagine taking away the precious moments with my last baby.

nursing from a mother's view

These breasts have fed three children and provided comfort for them.  I couldn't take that away until he was ready.  I think I needed to give him his time before I could even consider chopping them off.  I felt that way...like I was chopping my boobs off.

I looked at pictures and was horrified at first.  Now that I have done more research and found more support I feel better about it.

Jump forward two years and I married the love of my life.  After 10 years of living together, three sons and all the tribulations of life we finally decided to get married.  I know...a little backwards but o'well.

Our wedding day

We live a crazy life.  Its full of ups and downs, running like crazy for sports, different work schedules and just plain life.  We make the best of it all and have a blast in the process.

Recently we had a scare with my father.  His prostate has been enlarged and had to be removed.  The thought of losing him made me realize that I need to get serious about BRCA1.  I did my research and found a GYN that has lots of experience with BRCA.  I guess she is in high demand because I had to wait 2 months to be seen.  I went to my appointment thinking it would be the same as my previous doctor and I would have to ask for specific testing I wanted done and beg for things I thought I needed.  Wow was I shocked!  She is amazing!  She walked in the room, sat down with me and asked my opinion first.  She asked me where I was in my own head with this information and what I wanted.  We discussed breastfeeding and my plan to wait for the breast surgery.  She referred me to a general surgeon and plastic surgeon that work together well and have experience.  Amazingly it was the plastics guy that I had already chosen for my breast surgery.  I was impressed that we were on the same train of thought already.  Before I even had a chance to get out my list of questions she was answering them during our talk.  I went in planning to beg for breast MRIs and she brought it up first.  I had been begging my previous doctor for years but she guaranteed me that she will get it approved within the next 4-6 weeks.  She did a CA-125 test while I was there and ordered an ultrasound for the next day.  Wow what a difference it makes to go to someone that knows more about BRCA!

We discussed the hysterectomy portion and decided that it is time to move forward with it.  She also referred me to an oncologist that specializes in female cancers.  No waiting there...she called personally and got me an appointment for three days later.  I see him Tuesday morning.  She told me he may recommend an estrogen blocker.  I think I'm more terrified of the medical menopause than the surgery.

I am calling my GYN back tomorrow to set the date for my hysterectomy.  I had to get some things in line after seeing her on Thursday.  Short Term Disability denied me because I'm not outside of my 12 month preexisting clause so I have decided to liquidate my annuity to cover my wages.  Lots of big decisions and emotions over the past few days but I'm handling it.

A few weeks ago I decided I needed something to remind me daily that I am BRCA1 positive so I got a tattoo.  I decided I wanted the breast and ovarian cancer ribbon and added the word Strength because it takes a lot to get through all of this.  At the end of my journey I want to add the word Previvor to it somehow.

That's the beginning.  I lost my mother to ovarian cancer when I was a teenager and I don't want that to happen to my boys.  

My boys

Know your options, talk to others, join a group, make the decisions that are right for you.  For me the decision is clear because I watched my mom battle ovarian cancer for over two years.  I saw the fight and I watched her lose.  The journey scares me but cancer scares me more.  I live every day of my life feeling like I'm waiting for cancer to strike and I'm tired of it.