Monday, December 15, 2014

Holidays, Menopause and Loss

Loss is no fun for anyone.  Specially when it is back to back or constantly coming back to haunt you.  I lost my mom when I was young.  Shortly after my dad moved away.  He left me fragile and young with a child of my own to take care of.  I understand it now and I have forgiven him for how he handled the situation.  He was hurting and ran away from the pain.  It probably never occurred to him that I was hurting too and I needed him.  Humans are selfish beings.  It is engrained in us no matter how much charity work you do or how giving you are.  He was selfish and at that time in his life he felt like he needed to be.  If our relationship prior to my mom's illness was different things may have been different when she died.  Through the illness he clung to my brother and nephew while I clung to my sister.  Those were our support people that got us through it all.  Then after Mom passed away my dad clung to another woman.  I hated her.  I really truly hated that woman for coming in and trying to replace my mom.  How could this woman think she would ever replace my dear angelic mother?  Well, that was my interpretation of it at the time...

After all of these years I realize that she is good for my dad.  They take care of each other and neither of them are alone.  I do believe they love each other now but I know neither of them are in love the way they were with their deceased spouses.  It works for them.  The companionship and friendship they have is good for them.  They fight sometimes and that is weird to me.  My parents never fought.  I never saw one single fight between them.  It just didn't happen.  They loved each other so much that nothing could make them so mad at each other that they would fight and be hateful in any way.  That is the love that I have always wanted.  Love can conquer all...except cancer.

Cancer stole my mom from our family.  When I found out I was BRCA positive I instantly became obsessed with cancer.  I wanted to learn how this mutation affected me and any potential cancers I could get as a result of it.  I may have went a little mad with it.  Everything I felt or any symptoms I had I was scared that it was a sign of cancer.  I had my hysterectomy and BSO and that has calmed a little.  I no longer worry about ovarian cancer but there's the breasts, skin, colon, etc that I still worry about.  I'm not one of those "run to the doctor" kind of people.  I sit back and I stress about the "what if's" of it all.  What if I end up with breast cancer before I can have the PBM?  What if my children are left to live out their lives in the same situation I did?  What if their dad won't be there to support them emotionally if I'm gone? 

I know there are so many "what ifs" in life and worrying about them will not make the outcome any better but I can't retrain my brain to think differently.  I'm trying very hard though.  I don't think about it constantly but it does happen often. 

This weekend has been a rough one.  I'm mad.  I'm mad at Donnie. I'm mad at my situation. I'm mad at my inabilities. I'm mad at my frustration. I'm mad at myself.  I'm mad that I can't let go of the hurt and pain I feel from all of these losses in my life.  I'm mad that I have had to endure these losses and pain.  I have all of this anger inside me and I don't know how to let go of it.  I know I'm trying to work through the feelings instead of ignoring it but I can't seem to pinpoint where to start or what the root of all the anger is.  How do you put your finger on what is bothering you when you have so many things that could be the source?  It is overwhelming. 

I'm mad at how overwhelmed I feel as well.  I look at the house and I don't know where to start.  I can't pick a room and clean because the whole thing is staring me in the face begging to be done.  I get so overwhelmed sometimes that I just have to walk away from all of it.  It gets done but not without me feeling like I'm going crazy in the process.  That is just one example of the frustration I feel.  I want to ignore things and hope they go away even though I know it doesn't work like that.  I think if I ignore Donnie the issues with him will just go away but all it does is make me build up more hatred towards him.  Then that hatred comes out in snide comments and looks of disgust.  I'm careful to pretend in front of the boys but I guess that only makes me a really good actress.  Unfortunately, I am a good actress and have been for so very long.  I never let my feelings show when it is personal.  How many times people have said something about my mom and I say "its ok" when really its not at all??  Way too many to count.  Its not ok!  Its not ok that I lost her and its not ok that Donnie walked out.  It fucking hurts.  I feel lost.  I feel like I got dealt the shitty hand of life. 

Strong...everyone tells me how strong I am.  I don't feel strong.  I feel weak!  I feel like I'm weak because I can't have this perfect little life for the kids.  I feel weak because I can't handle the stress and pain.  All of that weakness I feel turns into anger.  It is a vicious cycle and menopause doesn't help any of it.  I feel like a crazy person muddling through life as I'm being thrown curve balls.  I just keep dodging and walking the path that I'm walking.  It is never ending and never changing.  It is full of pain, loss and anger.  I just want to find that rainbow that doesn't fade when the clouds move in.  I want to find that happiness that lasts through the hard times. 

Friday, December 12, 2014

Wow, its been over a year...an update!

Ok, I have been off the radar for a while so we need to catch up.

Let's see...where to start...

Menopause sucks but its manageable, I found out I have a form of lupus that effects my skin, I have allergies to things you can't get away from and I'm now a single mom of 3 boys. 

Yep, you heard that right.  Single mom status over here...

Totally unexpected on my part but my husband walked out.  No he ran out in the middle of the night and then broke up with me through a text message.  Pretty great way to end a 14 year relationship right?  That was in July.  July is a hard month for me.  My mom's birthday, my birthday, and our wedding anniversary are all in July.  Its an emotional month all around. 

For months I cried and begged him to come back.  I was miserable.  I didn't want to go on with out him.  Everyday gets better though.  I'm seeing two counselors...yep two!  I have come to realize I'm pretty messed up emotionally.  The first step is to admit it right?!

I had planned on having my prophylactic bilateral mastectomy (PBM) this year but now I have to put it off for a little bit.  I'm hurt by that because he was supposed to be there and support me through all of this.  I lost my best friend, my husband and my emotional support.  Luckily I have amazing people in my life that are there for me. 

So back to the previvor journey...menopause sucks.

Well the lack of a period and PMS is pretty amazing but the hot flashes and night sweats were killing me for a while.  I gained weight, fell into a depression, was always tired and just felt miserable for a while.  Then he left.  Wow I was a mess.  I'm getting better though. 

My doctor and I agreed we should increase my estrogen a little.  I'm still WAY below what a normal woman has but it helps with the menopause symptoms.  I still have hot flashes but I'm not stripping my clothes off in public as much as I was...and I wasn't even getting paid to do it.  Hell, with my road map of scars people might pay me to put my clothes back on. I tried a new medication called Brisdell as well.  It helped a lot but it made me so sleepy at night that I felt like I wouldn't wake up if the kids needed me so I stopped taking it.  I might try again though.  I wasn't in the best place emotionally at that time so it could have been a mix of issues.  The Brisdell doesn't have any hormones so it is safe for us BRCA Mutants.  Seems like a miracle drug if it didn't make me loopy and pass out.  Literally had to take it while in bed or I might not make it there before I was falling asleep. 

I had my first breast MRI in October.  I was scared to death of that thing.  I was scared that I would get sick from the dye, get sick from anxiety of being trapped and scared that they would find something.  My doctor told me to take some anti-anxiety meds before so I did.  I might have been a little too happy to show my sister the weird stickers they put on my nipples after because of it.  I made it through the test though.  Not without some anxiety but I made it.  Test results came back pretty good.  I have a few things they are keeping an eye on like always but everything looks good for now.  Four months and I have to get a mammogram...piece of cake!

Mammograms don't bother me at all.  Take your shirt off, let some nice lady put your boob in a vice and take pictures.  No big deal.  Then you get to see your images a little while you are waiting topless in a cold room to see if she needs to take additional pictures.  The pictures after squeezing your breast flat as a pancake are amazing though.  My breasts have never looked so good.  If you have ever had one, you know what I mean.  They are perfectly round and look even better than they did before breastfeeding 3 kids. 

Get your mammograms ladies!  It isn't nearly as bad as the horror stories.  I have never had any pain while getting one.  Ok sometimes its not the most comfortable position to be in but its not that bad.  At least we don't have to turn our head and cough.  We just have to turn our head while they squeeze our boobs.  Believe me when I say a baby grabbing your boob and using it as leverage to pull themselves up hurts WAY worse!  All moms know what I mean when I say that. 

Well that is a little recap of the last year.  Lots of crap but off to bigger and better things.  The saying "what doesn't kill us only makes us stronger" is kind of crap though.  I lived by that for a long time but I bottled up the emotions.  I'm learning now to process the emotions and let myself feel the pain so I can move forward with my life and be that "stronger" person.  This quote seems more fitting...

"We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.  The old skin has to be shed before the new one can come." Joseph Campbell

Thanks Laurell K. Hamilton for putting that in the most unlikely place for me to see. I needed it at that very moment.

Thursday, September 26, 2013

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.

Monday, September 23, 2013

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.  


Friday, September 6, 2013

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.

Sunday, September 1, 2013

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?

Friday, August 30, 2013

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.