Monday, January 30, 2012


Okay, that is my surgery journal!  It is in reverse chronological order.  If you are just starting your journey, go to the beginning of the blog.  I know it says January 2012, but I re-typed my personal journal from February 2011 through January 2012 regarding my one step bilateral mastectomy, bilateral oophorectomy and DEIP flap reconstruction, a revision surgery and follow ups.  I will keep updating this blog on life, love and BRCA2 appointments.  Thank you for being patient and I hope this can inspire everyone to take control of their lives with regard to their cancer risks.

Four Week Follow Up (January 27, 2012)

I had my four week follow up Friday.  It went very well again.  Everything is healing very nicely.  The only issue is my hips.  They are scaring and poofing again.  In fact, so badly, that I have to have a procedure to remove what they call "dog ears" again.  They are going to try to laparoscopically lipo the scar tissue, but he said they may have to re-open the incision and cut it out.  It will be in office under local anesthesia and should take less than an hour.  I scheduled it for May 8th.

I also had a follow up with the gynecologist.  We talked a lot about the hormones and my issues as well as how I resolved it.  I explained what happened on the Nuva Ring and told him I saw my local midwife to try something else.  I started the large Combi patch this week and so far it is great.  When I first went in they put me on the small patch, but after a couple months they bumped it up so that when the time is right I can step down before going off of it completely.  That will be in 30 years or so.  I have to change this patch every 3 days.  I am not going to lie, it gets annoying.  And it leaves sticky residue.  But I am not crazy so I have a lot to be thankful for.

Follow Up (December 27, 2011)

I went for my follow up today.  Joyce drove me since I still have a hard time driving.  My breasts are very sore and like last time, under my arm hurts the worst.  I can't pull or push or lift much and won't be able to for weeks.

My follow up was great.  I am so happy with the results.  I am still very swollen around my hips so I can't even attempt to button pants.  But since I am not supposed to be wearing pants, that shouldn't be an issue.  I could be swollen for up to 6 weeks after surgery.  This makes going to work in a week a bit challenging.  I mean I can't wear pants or a bra to teach high school kids...I see this going very wrong.

After my appointment we had a great lunch and did a little shopping.  We had to wait out the kids nap at pre-school.  It was a great day!

Revision Surgery (December 21, 2011)

I am out of surgery and very sore.  We are home now after almost an entire day at the hospital.  The surgery was two hours almost to the minute.  It went very well.  I woke up fine without vomiting this time.  I didn't have any type pf morphine, instead I had codeine and very high strength Tylenol.  I am still very tired, but I feel good. 

I have incisions under each breast, around each areola and on my hips.  The surgeons made the shape of the areola, it just doesn't have color.  They did a fantastic job.  I also got a small 100cc implant under each DEIP flap.  My lopsided boobs now look perfect.  I LOVE them!  They cut out some scare tissue on my hips and inside my breast (some of what was causing the lopsidedness).  He also did a bit of lipo to make sure my back hips were smooth, no more saddlebags!

I go back the 27th, after Christmas for a follow up.  No pants with a waist or bras for a month.  Back to sleeping miserably on my back.  I'll write more in a few days.

Pre Op Flub (December 2011)

I am trying to get my preoperative testing completed before my revisions surgery next week, December 21, 2011.  The only issue is that when they did my blood work, they forgot to do a pregnancy test.....

Have you figured out the irony in that statement yet.....

I don't have OVARIES.  If I was pregnant, it was surely an immaculate conception!  Once we got that issue taken care of, I was cleared for surgery.  We are doing the same routine this time.  We will be leaving Wednesday after work to stay in the hotel the night before.  I have to report for surgery at 6:00am.  I am very excited! 

This is an outpatient surgery under general anesthesia.  I shouldn't have a trach, and it should be about 2 hours long.

Birthdays, Thankgiving and Great Wolf Lodge..Again. (November 2011)

As I do less and less with my recovery, I have less and less to write about.  But we are also quite busy this time of year.  Andrea had a birthday early in November.  She had a bounce house party with her friends, then we had the family to our house to celebrate in a monster themed bash.  She is so excited to be four!  We are so proud of how far she has come.  She loves school and learning and is just soaking it all in.  We love seeing all the new skills she picks up on and shares with us.

This year, we had Thanksgiving with Ray's family.  Afterwards Jessica and I did some black Friday magic at Toys R Us.  It was AWESOME!  Afterwards I came home to catch a few hours of rest before returning to Great Wolf Lodge with Ray, the kids and my dad.  Andrea and Jackson wanted Grandad to come and he was so happy to play with them. 

Here are some pics: Wearing a bathing suit was somewhat difficult.  My breast were misshaped, so I needed a shaping bra and I was constantly readjusting.  I chose to wait on my second phase to miss less work, but in reality, there is a reason they want to do the revisions ASAP.  It is frustrating to have funky shaped breast for clothing and bathing suits.

Motorcycle License (October 1, 2011)

For my birthday this year Ray arranged for me to have motorcycle lessons at the local Harley Davidson shop.  They apparently have a great course for people who have never ridden.  At the end of the weekend you have your license.  Well, I PASSED!  I can now drive a motorcycle.  I feel like I am taking risks I never before would have, although always wanted to.  I feel fearless!  Things that seemed dangerous or scary before no longer do.  Next up, skydiving! 

**not in my journal: Pics of my bike!

Family Pictures! (September 22, 2011)

My cousin was nice enough to take some family shots of us this weekend in Gettysburg.  They turned out great!  Afterwards we went to Poolesville Day to walk around.  It was wet and a little cold but overall it was a great day!  Enjoy the pics. 
(BTW, with a bra, my breast look normal.  However they have settled and scared in such a way that without a bra they look lopsided and uneven.  I go back in a week to have it looked at).

Great Wolf Lodge (September 2011)

We are off to Great Wolf Lodge this weekend!  I can FINALLY get in the water safely.  I am completely healed.  My dad, in an effort to say thank you to Daniel and Jessica for being one of the few families to really help us this summer, paid for the eight of us to go to Great Wolf for the weekend.  We are so excited!!

The kids had a great time last time we went.  I am excited to show my new bod, and bathing suit!  Andrea is excited for the slides and Jackson wants to hot tub. 

** not written in my journal: Below are pictures from the trip.  It was AWESOME!

Raging Hormones (August 2011)

Literally!  I am a raving lunatic on the Nuva Ring.  I am screaming at everyone, I am mad as a hornet at every little thing.  Even when I know I am out of line, I can't control it.  Even when I step away and calm down, I am still mad and it impacts everything from that point forward.  Ray has even said, as well as other people, that I have really changed the past 3 weeks since I started the Nuva Ring.  I am an emotional mess.  I am raging in anger followed by sobbing in tears.  I took the ring out today and need to find a better solution.  This one is for you Ray: You have put up with so much and I am so thankful for your support.  You never judge me.  I love you.

Going Back to Work (August 2011)

We are in pre-service week right now.  I don't feel ready.  I have had extended time off with the leave I took last year.  I liked staying home.  I have to hit the ground running this week with SGA.  I am the new sponsor and I am totally lost as to what I am supposed to do.  Plan the pep rally for next week is task number 1.  After that.....?

I am getting a TON of compliments on how I look.  I am officially a size 6! 

The kids started preschool today.  Everything went well.  I really hope they like it.

August 2011

I haven't posted (written) in a while.  I am still feeling great!  I really have healed very well and very quickly.  I am completely taking care of the kids this month, all by myself. 

Jessica and I are going to a concert the end of this month in PA.  Jason Aldeen is HOT!  I also am going with my dad to my cousin's wedding in Chicago.  I am very excited for that.  I am more excited that I have lost a lot of weight since the surgery and can now fit into dresses I wore in college!  Woohoo!  Size 8!  I am feeling so great about myself. I am still not working out too hard.  Mostly just walking.  No weights yet.  But I plan to join the workout club at my school and do their boot camp workouts twice a week.  Work starts the 22nd.. :-(

A Week Alone

I am LOVING this week alone.  I have gotten so much done around the house.  I painted our room and the upstairs hallway.  I painted the stairwell, Andrea's room (and added the cutest border), Jackson's room and touched up the kitchen.  I cleaned top to bottom and everything is spic and span.  I also redecorated a bit.  I love our new home! 

Amy and her brother came over to help with the yard.  Ray is so busy working and taking care of us in the evenings, he has no time to do yard work.  So we fixed up the flower beds, cleaned up the yard, spread grass seed, cleaned up the patio and planted mums in the front.  I also painted our stoops since they were peeling apart.  I am so pleased with the results.  I can't wait for him to see all I've done. 

July 19-22nd

July 19th: Breast Surgeon- Great!  Best quote; "They look like breasts...and feel like breast!"

July 21st: Oncologist- I saw everyone in the office.  I usually do whenever I go.   They all worked with my mom and that's where I was planned my wedding and was pregnant with both kids.  We spent a LOT of time in that office.  They got to part of some very significant events in our family so they truly are like family.  They all loved the results and gave me a great report.

July 22nd: Gynecologist- All clear!  I need to get on hormones.  There has been some controversy over hormones and whether I should take them.  See, breast cancer is linked to higher levels of estrogen.  Thus I was at higher risk when pregnant.  So the question is, should I take synthetic hormones since I am in menopause to replace what is lost by having my ovaries removed.  It does increase my risk of cancer, but menopause increases my risk of osteoporosis and heart health.  So, we are doing a lot of talking and a lot of research.  At this point, we are going to try hormones.  The risk of not taking hormones is more than my risk of cancer at this point since I made the decision to remove my breasts.  Had I not, it would not be advised that i take hormones because the breast tissue would still be there for the cancer to develop in.  I am going to try the nuva-ring which is typical birth control as it offers both hormones and it is easy because I don't have to remove it for sex and I only have to change it every three weeks.  I don't have to allow myself a period, but I can if I choose to (who would do that?).

July 7th- Plastics Follow Up

Again, all is well in breast land.  Things have settled enough that the plastic surgeon is suggesting a small lift, and a small implant or fat grafting.  I have valleys on top of my breasts where my chest meets the new tissue.  This is completely normal and a typical revision. 

I have the all clear to wear bras!  I am very excited to go pick some new ones out and see what my size is.  My revision is scheduled for December 21, 2011.

Oh, he was VERY pleased with my healing.  He said I was healing about twice as fast as the typical patient.  I really am feeling great!

Independence Day (July 4th 2011)

We are hanging out with Daniel, Jessica, the kids, my dad and my uncle from Germany for the fourth as well as Jessica's family.  We have a ton of food planned.  I am feeling great!  I have even started watching the kids for a few hours in the mornings until Amy arrives.  I can't pick them up yet, well, I shouldn't pick them up yet.  They both are great and understand that mommy has boo boos.  They ask to see them occasionally and they are very sweet about it. 

This month is full of follow ups.  I see the plastic surgeon on the 7th, the breast doctor on the 19th and the gynecologist on the 22nd.  I also see my oncologist the 21st.  The last week of this month Ray is taking the kids to the lake with his family.  I am not going.  I plan to rest and get somethings done around the house.  I can't get in the water and I can't really do the kids so I am staying back.

4 Week Follow Up

Everything looks great!  The breast surgeon was pleased with my healing and said all the pathology came back clear.  The plastic surgeon said everything looked amazing for the first phase and we talked about what I wanted for the second phase.  The tissue is doing well and after it settles we will be able to determine exactly what revisions need to happen. 

Saturday, January 28, 2012


I drove today for the first time!  It was a little hard, but it was okay.  I just went to town and back, 10 minutes. 

I am off of the pain meds and just on Motrin.  I actually need it the most at night to help me sleep.  Sleeping is very difficult.  I have hot flashes that wake me up.  We now have a floor fan and a window AC unit.  I can't get it cold enough.  I also can still only lay on my back propped up.  It's so uncomfortable.  I want to turn over in the worst way.  I use Advil PM to help me get to sleep.  But it only works for a couple hours.  I am exhausted!

Rotovirus (June 2011)

Jackson and Lyndsey and some others from the party are very sick.  We think it is Rotovirus, which Jackson is not vaccinated for.  Ray is sick as well.  This week has been amazingly difficult.  He is finally on the up and up.  It started Monday after the party.  Jackson threw up all over his bed, then again after his bath.  Amy, our babysitter was great.  She stayed here even though she could have caught it.  As the day went on, he began to vomit more and more, become lethargic and stop eating and drinking.  We took him to the doctor that night where she was able to get him to take a Popsicle. 

The next day he was still the same so we took him to the ER.  He was given Zofran and he was like a new kid!  Amazing!  He started drinking Ginger Ale and we went home.  The next day, repeat of the previous days.  We went back to the ER and he had to have an IV.  He was doing better, drinking juice, but he pulled the IV out around midnight and hasn't had anything to eat or drink since.   The next morning we were discharged, even though he hasn't drank and hasn't peed in over 24 hours.  Our pediatrician is not happy!

The last day was so bad.  We didn't want to go back to the hospital, but he was not getting better.  He started vomiting again so the ER called in some Zofran for us.  I had to run to the 24 hour pharmacy which thankfully has the generic in stock.  This is so awful! 

Jackson started feeling better after about 5 days.  Ray as well.  Andrea and I thankfully never got it.  Had I contracted it though, I would have been on serious medication as I am barely 3 weeks out from surgery.  This amount of vomiting could damage my healing insides.  I am just so thankful everyone got through it and I didn't get it. 

Kudos again to Amy!  Its amazing to have great people working for you and helping you.  Thank you!

Jackson's Party! (June 18 2011)

Today was Jackson and Lyndsey's birthday party.  Dora/Diego theme was so cute!  We have tons of food.  I mean TONS!  We had a pinata and the best part, a slip n slide with baby soap.  Everyone had a blast.  A HUGE thanks to Jessica for doing most of the cooking, all the decorating and just being awesome!

I am exhausted.  I really over did it setting up.  But I will rest tonight.  I am finally eating.  Slowly but surely.  It was everything I could do today to not devour the five layer dip....I had to take it slow.  But I still had quite a bit.  I am down 10 lbs from pre-surgery.  Which puts me at my weight when I got pregnant with Andrea and between Andrea and Jackson. Woot!

1 Week Follow Up (June 9, 2011)

We made it to Baltimore today.  The car is not so bad, even with the bumps.  I do have nice homemade pillows I was given from the breast surgeon's office.  They make the seat belt bearable. 

I cried today in utter fear of the drains coming out.  It was nothing!  It didn't hurt one bit!  I mean not one bit!  Ray laughed at me for the amount of fear I had over it and it ended up being nothing.

Next follow up is in 3 weeks.  We go back for follow ups with the breast surgeon and plastic surgeon.

Thank You Visitors! (June 2011)

It has been great to see everyone that has stopped by.  Thanks for the food!  Ray and the kids are definitely enjoying it.  I on the other hand am not eating anything yet.  I had this after my cesarean as well.  I just lose my appetite for weeks. 

Actually, this time, if I eat too much, which is anything at all, the skin that is so tight on my abdomen feels like it is ripping.   There is no room in there for my stomach to expand at all.  Talk about a diet. 

The kids are going to my in law's house each day this week.  Daniel picks them up in the morning on his way to work and then drops them in the afternoon.  I am not awake much, but it's nice to have time with Ray.  I am so thankful for him and his patience.  He has to do everything for me right now, including nights with the kids, mornings, dinner, baths, and on top of all that, anything I need.  He is amazing.  My love for him has grown so much since we started this journey in March.  His dedication is overwhelming. 

We go for my first follow up Thursday.  I hope to get my drains out.  I pulled the pain pump threads out today.  I was terrified, but it didn't hurt a bit.  Now I am dreading having the drains out.  They are like a straw width.  I can't imagine how this is going to feel.  I am very nervous!  I'll update afterwards.

The Days After (June 2011)

I successfully made it out of bed.  I sat in a chair for hours yesterday.  I am getting up to use the restroom and get ice all by myself now.  I have to say that, for all the fear I felt, it was much easier this time around than after my cesarean.  Actually, outside of that first night, this entire surgery and first few days of recovery are easier. 

I have much more range of motion than anticipated.  My drains are doing well.  I am certainly draining, but they are not super full and that means I should get them out in a week.  I have four.  One in each breast and one on each hip.  I also have a pain pump inserted into each hip with an automatic lidocaine ball.  It washes the abdomen periodically with pain meds.  Up top, I have pain meds in my IV as well as an anti nausea and Tylenol for my fever.  I am feeling good, although as expected, I am not hungry at all.  I am having a hard time focusing and staying awake due to the meds.  Trying to post on Facebook and play Words is nearly impossible.  I don't have the brain power at the moment.  TV is definitely the extent of my abilities at this point. 

I go home today, Sunday June 5th.  This is also Jackson's birthday.  He can't come see me in the hospital, although he and Andrea are in Baltimore today with Jessica and Daniel and their children.  As a thank you to Daniel and Jessica for watching the kids this weekend, we arranged a day at the Children's Museum just down the street from us.  Since they can't stop by the hospital, they are going to stop by afterward the museum at our house and have some cake and drop the kids off.  We are so grateful to them and all they are doing for us.  I miss my boy, that's for sure.  Happy Birthday Jackson!

The Surgery (June 3, 2011)

We are now in a regular room.  I got on the table at 11:30am yesterday, about a half an hour late.  I don't remember anything.  I guess I was done at 10pm, however I spent a few hours in recovery where Ray and my dad couldn't see me.  I remember coming too from the drugs just to vomit.  I told them I was allergic to Morphine, but the nurse said they wanted to try Dilauded  since some people who can't tolerate Morphine do okay on Dilaudid.  I guess I am not one of them.  You don't know pain until someone cuts you in half at the abdomen and within hours you are heaving.  WOW. 

I did eventually get to my ICU room.  I again don't remember much except that I had to lay with my arms propped up on pillows to allow blood flow to my chest.  This helps prevent the tissue from dying.  Ray and my dad were able to stay a little while which we thought they wouldn't be able to do.  I don't really remember them being there at all. 

I woke up in the middle of what I guess was a hot flash last night.  I was sweating bullets and I couldn't move.  My shoulders were so amazingly sore and stiff it was the worst pain ever.  I could barely reach the call button, and when I finally did, I could barely speak because my mouth was so dry.  I finally got out that I needed someone to take the blankets off of me.  They rushed in with ice chips to help.  I was so grateful.  But as I lay there, I thought "What have I done?  I feel like I am going to die.  I am never going to feel better, I feel that bad."  I was all alone, and I was in a lot of pain and I thought this is so much worse than I was prepared for.

Ray come in this morning pretty early.  I was so glad to see him.  My dad came too.  They were asking me what I remembered, which was pretty much nothing.  They said that I was out of surgery for hours and they were getting panicked because they wouldn't let them back to see me.  It was nearly 3 hours after I was out of surgery and they feared something was wrong.  They kept calling and calling and calling only to hear that someone would come get them in 15 minutes.  Ray apparently was pacing as he and my dad tried to get back to see me.  My heart apparently was palpitating.  I had an extra beat occasionally.  I was also running a fever.  None of this is alarming to anyone but me, Ray and my dad.  The staff has seen this dozens of times.  I was transferred out of ICU this afternoon to a regular room. 

Ray has booked his hotel room for the rest of the weekend so that he can sleep there at night.  I wish I had him here, but I understand.  I just hate being alone here.  I feel so vulnerable.  If someone tried to hurt me, I could do nothing.  I sat up in bed today and tomorrow they are going to make me get up out of bed.

The Night Before (June 1, 2011)

It is the night before.  We are at the hotel in a very nice room.  We met my dad here for dinner.  I can eat and drink up to 8pm.  I just had a small sandwich though.  I think light is better.  We have to report at 9am tomorrow.  I am scheduled to be on the table at 11am.  I am so glad I have my men to stand behind me tomorrow.  Ray will be updating on mine and his facebook walls and via text.  We have a list of people anxiously awaiting updates.

Beautiful Wedding

We had such a great time at Andrea's wedding this past weekend.  David is so nice and we really enjoyed meeting him and his family.  Little Rock is, um, HOT!  But it was perfect! 

T minus 2 Days!

Bridesmaids... (May 2011)

We are off to Arkansas this weekend so I can stand behind my best friend as she marries her man!  I have never met David, but if she picks him, then I do too.  I didn't make my goal of wearing an 8, but I am wearing a 10!  We will fly back from the wedding Monday (Memorial Day), work Tuesday and Wednesday, then head to Baltimore Wednesday night.  I am getting pretty nervous.  I am still confident in my decision, but I am nervous that it's going to hurt.  Yes, I know that sounds pretty stupid, but that's what I am scared of.

Hurry Up and Wait (May 2011)

We are all set to go for the surgery.  Aunt Jessica has graciously offered to watch the kids 2-3 days a week for free.  Sometimes she will come here and other times we will get dropped off there in the mornings.  I won't be able to drive most of the summer.  The other days a week we arranged for Amy, our regular babysitter, to come over and either take the kids or stay here with them.  We are so relieved to have this sorted out.

We are just waiting now.  I told work that I was taking leave.  I told them in an e-mail.  I found a sub willing to take on my classes (no small feat, I have 5 special ed classes) for the last two weeks of school.  Basically it is just exams.  But still that a lot of grading and responsibility.

My dad and Ray have taken off work to be with me the day of the surgery.  We also arranged to stay in a hotel the night before so we didn't have to fight rush hour traffic or risk being late.  Ray has off for 2 weeks after the surgery because I won't be able to shower, I will have drains and I want him and no one else to help me with some things until I recover enough to do them on my own.  Particularly showering.  It's times like this that I truly miss my mother.  She is the only one I would allow to help me, as an adult, shower.   I miss her so much!

Childcare Dilemna (April 2011)

I am so frustrated with childcare!  I won't be working and it is SO expensive.  I am looking on for someone or some place the kids can go during the day while Ray works.  I will not be able to take care of them by myself.  I am looking for full time or part time, whatever, just something.  You would think if you watched kids for 10 hours a day you wouldn't ask for $15-20/hr.  What?  Preschool is cheaper!  And if you are in my house, you are using my utilities and eating my food! 

We found a fantastic housekeeper.  We have the other chores under control.  It's just childcare! 

Friday, January 27, 2012

Weight Goals (April 2011)

Jessica and I are busy utilizing our gym membership.  The weekend before the surgery, I am a bridesmaid in my best friend's, and children's Godmother's, wedding.  I want to fit into a size 8 (I am a 12).  So we are plugging away at our weight issues.  I also think I will lose about 5-10lbs of tissue with the surgery and that will put me close to my goal weight...if I lose the 15lbs. ahead of time.  Plus, the more fit I am the better I should recover.

The PT meeting was great!  I have about 20 exercises to do three times a day for 2 weeks.  Then I do another set of exercises three times a day for the next 4 weeks after that.  I will not be able to raise my arms above my shoulders and bending will be cumbersome for the first two weeks.  Obviously, with the abdominal surgery, transitions from sitting to standing or laying to sitting will be very challenging. 

I hated my C Section (which is why I fought so hard for a VBAC) because it was so painful to move afterwards.  I can't believe I have to go through this again!


I am so conflicted over these nipples!  I feel like I am overreacting, but I just don't know how its going to look without them.  At our consultation, we were told I cannot save my nipples; that too many cells are housed in the milk ducts which go through the entire nipple.  The surgeon said he would not allow me to save them. 
I have been looking online at a lot of pictures of reconstructed breasts and nipples.  I am a little excited that I get to have a say in the size, shape and color, but it will be awhile before I get them.  Basically, the plastic surgeon will use my tummy skin (full of stretch marks for texture) to fill the missing space.  After healing, I will have a follow up surgery to stitch an areola.  After that is healed, they will be tattooed.  So we are talking about a year of Marilyn Mansion freakishness.

Taking Care of Business (April 2011)

I have been busy preparing for the surgery and recovery.  I have an appointment next week to see the physical therapist at Mercy.  I guess I will be pretty immobile and will need to do some PT to get my full range of motion back. 

In the mean time, I am looking at housekeepers, lawn care services, nanny/babysitters/daycares, there is a lot to cover.  I guess I do a lot for this house.  They are saying it could be weeks or more until I can perform routine tasks like cleaning or even showering.  This is not sounding like fun.  Although I am excited that at least for a while, I can just sleep, watch TV, read, and hang out in my bed all day long!  Silver lining!

And the Date is....

June 2nd.
Jessica and I had planned Jackson and Lyndsey's joint party for the 4th.  I guess that is not happening.  We had to move the party to the 18th.  We did however determine a theme: Dora and Diego! Fiesta!

The coordinator did the very best she could.  And if I had passed this date up it would have been pushed back into July if not August which means I wouldn't be able to go back to work on time in the fall.  So, while this is a bit inconvenient, as I will have to take 2 weeks off work, it is the best it can be. 

Verdict is in...Surgery On! (March 2011)

Ray and I went to my consultations today. Mercy is a very nice place and everyone was very nice to us. We met first with Dr. Friedman in the Hoffenberger Breast Center. He is the director of the breast center and came extremely highly recommended. He first spoke to us about BRCA and the implied risks of the mutation. He then talked about different treatments. He strongly feels that in my case "wait and see" in not the best choice. He said something though that really hit me. Having an oophorectomy only decreases my breast cancer risk by 40-50%, which means I still have about a 50% chance of developing it. He completely solidified my decision to have a mastectomy and an oophorectomy.
We saw Dr. Ryu next who performed a routine exam on my ovaries and uterus.  We then sat down and again talked about my risks with the mutation and what an oophorectomy would give me.  Basically it would take my risk of ovarian cancer down to the single digits just like anyone else in society.  We talked about a totally hysterectomy, but we decided against it.  While I will still have periods if I choose to, there are additional risks to removing the uterus.  As well as being more invasive (something I tend to avoid like the plague), BRCA2 (and 1 for that matter) are not related to uterine cancer, so it doesn't buy me any benefit for its risks.  He will though be taking the corners off the uterus where the fallopian tubes enter. 
After Dr Ryu, we saw Dr. Chang.  He will perform the DEIP flap surgery and reconstruction.  Basically, they will take skin from my abdomen (there is plenty thankfully) and move it to my breast pockets to form breasts.  They will also have to spin an artery from my sides up to provide blood to the tissue to keep it alive.  There is a chance the tissue could die in which case the DEIP flap would need to be removed and I would have to have more surgery to reconstruct.  While this is my biggest fear, it is minimal that it will occur. 
Overall, we were very pleased with what everyone had to say.  All three surgeons felt that if I was ready and don't want to have anymore children, the sooner the better in my case.  I appreciated their support and confirmations on my own feelings.  I should find out this week when the surgery will take place.  I asked for anytime after May, and I am hoping for later in June to avoid missing any work.

Reality Becoming Real (March 2011)

I called Mercy Medical Center today and set up a consultation. This surgery will require three surgeons. I go March 8th. I am scared they will tell me I need to wait until I am older. Some doctors recommend waiting until after 35. My oncologist though, who treated my mother until the day she died, feels that if I am ready this step is completely reasonable.   We will see...

Out of Control (March 2011)

I am beginning to realize that I don't have a lot of time this summer to have a surgery (mastectomy), recover, have a second surgery (oophorectomy), and recover.  I don't want to miss too much work at the end of this year or the beginning of next.  And I don't have that much paid leave.

After speaking with the oncologist about my concerns, she told me that if I had a gynecologist from Mercy Hospital, where I plan to have the mastectomy and reconstruction, perform the oophorectomy (as opposed to my OBGYN here), I could do the mastectomies, reconstruction and oopherectomies in one surgery.  WOW.  10-12 hours under and three surgeons.  This is major. 

On a good note though, she told me that they can spare my nipples.  This to me was like a cancer patient hearing that they won't lose their hair.  Ray and I had a long discussion about my nipples to which he said he couldn't care less about them.  I, on the other hand, could only picture Marilyn Manson in the white jumpsuit from the "Beautiful People" video.

One Scary Step Forward (February 2011)

After discussing my options with my oncologist, I am seriously considering a bilateral mastectomy as well as an oophorectomy.  For mainly selfish reasons of course.  Besides the obvious, surgeons are now using tummy tissue and skin to reconstruction breasts after a mastectomy.  That's like getting a tummy tuck AND a boob job.  Nice!

Done (February 2011)

After a long discussion this past weekend, Ray and I have decided that we are not going to try to have more children.  We feel comfortable with our family.  We want to be able to give our children as much as we can without having to worry about finances.  We want to take trips and send them to college.  Not that we won't make more, but kids cost more as they grow and we feel content.  Why mess with perfection?

However, this conversation comes after my annual consultation with my oncologist.  You see, I was to have my family before 30 so that when I was done I could start considering prophylactic surgery.  Basically, I would proactively remove my ovaries (called an oophorectomy) to combat my 30% chance of developing ovarian cancer.  This would double as a reduction in my breast cancer rate as well.  I set up another meeting with my oncologist to discuss this.

Thursday, January 26, 2012

My Awareness Branding (i.e. Mommy Tattoo)

I got this tattoo in 2010.  We don't often get tattoos, so there is a lot here even if it appears rather plain and simple at first glance.  I had to jam pack it so that I didn't have to commit to more :)  Obviously, these are my children's footprints.  They are the actual prints from the day they came home from the hospital.  My daughter's print is wrapped in an Ovarian/Breast Cancer awareness ribbon.  Like me, she may have the BRCA2 gene.  This is also a tribute to my mother who passed in 2009.  My son's print is wrapped in the VBAC awareness ribbon.  My pregnancy, birth and decision to breastfeed were all very conscious decisions to decrease my risk of cancer.  I was very calculated in that matter.  I feel as strongly about women's rights and reproductive rights as I do about cancer awareness and research.  His weight is included as a reminder that our bodies will make a baby we can physically birth.