There are no Black Friday specials for breast recontruction

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This may be my most personal and emotional post to date. I apologize in advance if I ramble with my thoughts throughout. I still can’t fully wrap my mind around what all is happening, I know that it’s what I have to do, but I will be honest I don’t want to! I want to start with the emphasis that a mastectomy is not a boob job. When I started telling everyone the decision that I had made I received the endearing comment “at least you get new perky boobs” I understand that people try to find the positive in every situation and try to use that to comfort, but it didn’t. Nothing helped and no fault to anyone. Just until about a month ago I did not understand a mastectomy procedure fully. All your breast tissue is removed down to the chest cavity, sometimes lymph nodes will need to be removed, this is usually decided during surgery. This is why it’s called breast reconstruction, you literally are starting from ground zero to reconstruct everything including the breast mound and the breast.

When Dr.Frame told me that we could start reconstruction immediately I thought “Ok so I will go to sleep with breasts and wake up with breasts” not so bad right? It doesn’t work like that always. Everything depends on your health, your skin condition, your skins  elasticity, your body frame, how big/small you currently are, etc.. so this is a complicated procedure. I had approx 7 weeks until I seen the plastic surgeon to decide what route we will take. This was so overwhelming, there are so many different ways to reconstruct, again I don’t handle big decisions well let alone a lot of choices. For the next 7 weeks I researched and decided that I would do DTI (direct) this is the less painful of the methods and I want a short recovery if possible and would have fat grafting to fill in around the implant to make round and so you wouldn’t see the outline of the implant). Did not want tissue expanders…NO WAY

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I met my plastic surgeon on Nov.15th,2016. Let me tell you how long of a wait that was! i was so nervous all day and my appointment wasn’t until 3:00pm. I had made up my mind on wanting DTI so I was mentally prepared to pick out what type of implants I wanted (teardrop,gummy bear,saline,silicone,high profile,med profile,low profile..) again overwhelming! When I got called back the nurse said to sit on the bench and the Dr. would be in to discuss and then I would do the dreaded undressing and exam my breasts. We waited for about 20 minutes, I didn’t know how to take him. I think he was nice. He asked me how I found out about the BRCA and again asked about my family history, surgeries, problems with anesthesia, what size bra I currently am and if I wanted to stay that way. He wrote all this down and told me to change and that he would be back and we would discuss options… Ok, well I am doing DTI… He came back and opened the cape and immediately started measuring, lifting and pulling.. kinda rough.. Ok, now i am embarrassed. I look over at Nick and he mouths “Are you ok?” I don’t even know if I am ok..I don’t know what I feel. His nurse writes all the measurements down and then she takes pictures of my breasts, this is great.. I feel so ashamed. I get dressed and he comes back to discuss options with me.

He comes back in and says “Ok we can do this, this is scary and I understand” His bedside manner is a little better and I think he senses my anxiety. He starts talking and I hear the words “tissue expanders” wait..hold up.. you lost me.. I said I want DTI he said that’s not an option for my body type, and I would defiantly be smaller and he doesn’t perform that procedure. I am fighting back my tears, my ears are red, my skin is splotchy. I kept asking “why” “Why don’t I get options? I don’t want tissue expanders” He said “Kathy you do get options. You get the option of no chemo and no radiation and you get the option to live.”He explained the process, he would place the expanders (looks like an empty implant) under my pectoral muscle to expand my tissue to make room for an implant, and he said “it’s going to hurt like hell” I would get saline fills every week or two and we would stop when my skin has had enough, this is when the skins elasticity comes into play. I am beside myself, I can’t really comprehend what is happening. These are like bricks on your chest and the doctor said he cant explain how tight my chest will be and will hurt worse with the fills as I get bigger.  He also said there will be 3 steps, the second surgery will be the implant swap, this will be outpatient but will be a recovery for 2 weeks and will have drains again. Approx 3-4 months after the mastectomy. He said there will be nips and tucks and they will not be perfect, he can tell I am not ok at this time. He said “this is not cosmetic this is reconstruction.” I asked if I can keep my nipples and his exact words “umm no they are to far stretched out from having kids and breastfeeding” Wow..Ok didn’t think they were that bad! Then I asked him what size I would be and he couldn’t answer. He said “maybe a B cup” Ummm no…. I am far from a B cup and want a full C, this was the 3rd slap in the face of reality this visit. No DTI,No nipples, and maybe a B cup. Reality has hit. The 3rd step in this process would be nipple reconstruction or tattoo, this is done about 3 months after the exchange surgery. So this is a long recovery and drawn out one. i am worried about my mental health, keep in mind that I will have a complete hysterectomy at the same time.

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The above is the drains (4) that i will have for 3-4 weeks after surgery

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The reason for tissue expanders is that you can monitor your size, based on how well your tissue and skin will stretch. Sometimes your body will reject the implants if they are done immediately and that poses even more problems, and the reason you usually end up smaller with DTI is that implants aren’t made that big, the reason you see big boobs after a boob job is because they are using the existing tissue and adding to it. Again we are starting at ground zero. As he put it “slow and steady wins the race” I looked at pictures of his work and they all looked good. I am not a candidate for DIEP because although I do have extra tissue and fat around my belly, not enough to reconstruct 2 breasts at a C cup. I am having a hysterectomy and cant have this done at the same time, and i honestly don’t like the side effects from this procedure. We filled out all the paperwork, got the prescriptions, he gave me a prescription for Valium and told me to take the night before.

I got in the elevator and lost it emotionally, I cried hard once I got in the car, I couldn’t drive. I cried all that night and even the next morning as I was getting ready for work.Nick said that he had never seen me this beside myself. I have a great support system, a great husband,great friends,great boss, a great job, a great team of ladies at work, a great church family and of course my family that will get me through this. I have a hard time living my faith but I have been and will continue and strength in the power of prayer. December 5,2016 7:00 am is my surgery day, a long recovery ahead but I am ready for this to be all a memory. Things could always be worse. This may teach me how to ask for help, lord knows I will need it. Ready for all this to be a memory..

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I am just not ok…Reality has hit the fan

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This is an impromptu post, this is just nothing more than raw feelings. I am scheduled for surgery in 19 days. 19 freaking days!! I have met with all 3 surgeons and everything is finalized. I am a planner and when I met with the plastic surgeon yesterday and he had a different plan for me, that is  when reality hit and it hit hard. I can not expect anyone to fully understand the complexity when I cant even comprehend my own emotions. I didn’t even make it out of the doctors office before I lost it, I couldn’t even drive home. Those that don’t know me well, that’s just  not me. I am usually in very good control and am not a “public” crier well the waterworks are flowing for sure.

I am still learning all this day by day, this is such an emotional roller coaster and I am pissed. I have a right to be pissed, right? I don’t even know. I would not even want my worst enemy to have to deal with this. It’s life changing, both surgeries. I can not hear another comment such as ” at least you get new boobs” again, I just can’t. Look up mastectomy with reconstruction, this is not a boob job.  I had no idea that this would span into 3 different surgeries, can take 6 months. Will take 2 years to completely heal and will have little to no feeling. Will I even be able to look in the mirror? Are my hormones completely going to go haywire? Depression? I really am getting transformed into a new person and I don’t even know who that person is.

I am entitled to throw a pity party right? I want to just call off the whole thing and just take my chances, I was given a prescription for Valium to take the night before surgery, I think i will need more than 1! I write this to ask for prayers, I am not good at asking for help but I will and do need it and nothing anyone says will help so just prayers. I have never had to muster up this much courage and as the days are leading up to the day I am struggling. I am so ready for this to be a memory and get on with my life. When I started this blog I told myself that if I was to do this to be completely honest, as much as its hard to let my guard down, if I can help one person than my pain and candidness is warranted. Please lift me up in prayer.

 

Menopause at 35…To HRT or not?

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The mastectomy may be the more emotional aspect of this journey but definitely cant be upstaged by the choice of the hysterectomy. I have spent an equal amount of time stressing about this choice.When you are BRCA positive it’s important to be proactive about your breasts and your reproductive organs. My breast specialist said that if you are going to take the profalfic  route then we need to have both surgeries. The ovaries are the hub of hormones and the majority of breast cancer is hormonal driven and starts with the ovaries! So these bad ladies needed to come out! Do I wait until I am closer to 40?Do I suffer with menopause? Will I gain weight? Will I lose my sex drive? Heart disease? All these questions plus more needed to be answered.

Some background on my reproductive health. I suffer from PCOS, My ovaries produce wrong levels of estrogen and progesterone as well as developing an insulin resistance  and reduces my metabolism, which is where my struggle with weight plays in.. and this condition is hereditary…damn genetics… I have been in pain for 10 years battling this condition. This was the culprit for our fertility issues,  I have developed cysts that have been as big as a grapefruit! Had painful intercourse, low or little sex drive (was so bad once that me and my husband went 1 year of no sexual relations) , irregular periods, heavy periods that would last upwards of 14 days.I tried taking all sorts of medicine but nothing helped. My doctor convinced me that a hysterectomy would not solve this issue at all since it was in deed a hormonal disease. There is also medical research that backs this up as well, so i suffered through it besides I was scared to death of menopause anyway but the symptoms i am already suffering are the same as menopause so what i was really scared of? Needless to say my doctor refused to perform the surgery based on the BRCA outcome.  Time for a referral.

I was referred to an actual oncologist GYN, who was a man (I have never been to see a man) and his last name was the same as mine…. Ok a little weird! I had 5 weeks between my initial diagnosis and  my first meeting with him. I googled and stressed like crazy! I had read that HRT (hormone replacement therapy) was awful and to much of a risk, could still cause cancer, blah..blah… I am 35 I need my hormones! I am a professional and deal with people everyday, I need my hormones, I have a husband and kids and deal with them everyday…I need my hormones! I had convinced myself that I needed to wait.

Armed with pages of questions, I met Dr.Williamson on Oct.31st,2016. He was so nice and so genuine and patient with me and answered all my questions, we prob talked for 30 minutes and I was never rushed. After listening to me this is what he said ” I can help! If you were my sister i would tell you that you have to do this surgery, there is no option! All your previous problems will disappear” But if my ovaries develop the hormones then shouldn’t i keep them?  He smiled and said “your hormones are shitty now, with this we can actually elevate them and keep them stable” Here are my other key questions that he answered:

Sex drive? IT will be better than ever

Quality of sex? He laughed and said that obviously was up to us but my body will not be in pain anymore so sex should be better than ever.

Weight gain? Its a myth, in fact you will probably be able to lose weight since your ovaries will be gone.

Heart Disease? You are able to take HRT

Bone loss? You are able to take HRT

I secretly (secret no more) suffer with mood swings so the thought of getting that fixed and to help my relationships makes me excited that this could be an answer and I can finally feel normal!

HRT has no direct link of danger to BRCA and has been proven safe. Now we will have to play with the dose to get just right but should be elevated in 3 months. Can start as soon as I come out of surgery, so no menopause… YES! I can take HRT until I am 50.

Since I do not have cancer and I am having both surgeries done this is why I am able to have it, if I had chosen to just undergo the hysterectomy then I would have breast tissue that would be at risk and would not be allowed. This is when I am thankful for the test because knowledge is power and the ball is in my court, I am feeling a little less depressed.

I never knew there was so many types of hysterectomies, normally with BRCA it is recommend that you have what is called an oophorectomy and salpingectomy (ovary and tube removal) The doctor said we needed to go ahead and just take everything since I have had other issues and will prevent another surgery in the meantime. We wanted robotic but since i am having the mastectomy the same day we couldn’t get the OR with all 3 surgeons so we opted for laparoscopic. Will add more recovery time but the pain from the mastectomy will mask the abdominal pain which is one of the reasons I am ok with having all surgeries done at once. I will be having a radical LAVH hysterctomy done. I supplied a chart as i found it interesting. Man what a day of total body violations, sucks being modest!

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“Sometimes the right decision feels like the wrong one.”

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With the last two blogs we have established that I had decisions to make. These decisions weren’t to be taken  lightly and that was a huge stress on me. Whatever I chose will be life changing and will affect my quality of life. I don’t think I can adequately describe my true feelings. I have good days and bad days. With my fate in front of me after meeting with the genetic counselor my odds were as follows : I am in the high risk age range as well (35 yrs-45 yrs) BRCA is short for BReast CAncer.

Breast Cancer 99.7% (hormone/estrogen driven)  normal rate is less than 20 percent

Ovarian Cancer 85.3% normal rate is less than 6 percent

I am also a higher risk for Pancreatic Cancer and Melanoma (currently no screenings available)

Ok, so there are the numbers in front of me. My personality will  not  allow me to handle the high risk  screenings every year, and besides I HATE those tests! I would have to do them every 3-6 months with some quite invasive methods of testing’s as well.  The financial side with each test costing upwards of $1,000 out of pocket and I would ALWAYS have to have these screenings done. Now I will say that anyone that chooses that path I respect fully, I just knew that my daily everyday life would not be the same and I didn’t want to constantly wonder if this would be the day? Did I mention that I am constant worrier?

I could also take a anti chemo drug the rest of my life that would lower my chances by 30% I never weighed this option. The risk was still to high for me and lets be honest I am not going to remember to take a pill every day. One of the reasons I have 3 kids, couldn’t remember to take birth control pill every day!

I could not bury my head in the sand, I did want to! I wanted to just act like everything was fine, my anger for knowing and taking the test has subsided. Knowledge is power, and I am cancer free at the moment so the ball is in my court and can make some choices while I am able to and have more control of the outcome. Here is what my deciding factor was.. My 3 beautiful daughters, its that simple. I had to be here for them. I had to be brave for them. We learned that they now have a 50/50 chance of carrying the gene themselves. If they choose to get tested as an adult and decide to take the preventive route I can be there and support them 100% since I have been there and done that. I still wish that I had personally known someone who had been in my shoes, that’s what helps when you can be empathetic. I watched my dad die of cancer, never would I want to put my kids through that and if I have this knowledge then I need to minimize my risk as much as I could. I cried and cried and cried but I knew what I had to do. I needed to have a double mastectomy and total hystectomy with ovary removal. Not going to lie I had a pity party. 35 years old losing both breasts and facing menopause scares me to death, still does! Beats the alternative thou right? But still as I write this I wonder if I am making the right decision, am I being dramatic? What if? Can I really do this? My breasts is the hardest part for me. I am a woman and as anyone else has insecurities and flaws and I have had 3 kids so definitely not perky and early 20s, but they are MINE and I personally am partial to them. The fear of being less desirable lingers, will my husband leave me? will I have a stigma attached?  Tons of questions still  running through my mind. How do I tell people? What judgments will be made?

Here is the next kicker, needed to happen fast.. Since I had already had precancerous cells on my ovaries a few years back and had started to develop lumps on my breast, my breast specialist thought it was my bodies way of saying “Your time is coming..” and If I was to develop cancer I could NEVER take hormones, well shit… Have you met me? Believe me I need my hormones! I went on the consult train and was told to prepare to have surgery in 4-6 weeks.. What? this is happening this year?????!!!

Again, I have had amazing support. People tell me that I am so brave, so courageous. No I am not! I am scared out of my mind. I am no hero. I ,for one am not the only one that has this gene (immediate family, yes that we know of) I just feel like math is math and the numbers don’t lie. If I wait until I have cancer and have to sit my kids down and tell them their mom may die, and me knowing all along that I could have prevented this but was just to scared is not an option for me. Knowledge is power.

December 5th,2016. I will undergo a double mastectomy with reconstruction and a complete hysterectomy. 3 surgeries at once,  3 surgeons.. 8-10 hour surgery. 12-16 week recovery.  This will be the day that my life changes and I am hoping that all goes well, I will find the courage, the strength, the peace, I will not let this define who I am, I will beat the odds that are given to me.

I made my decision.

Genetics….They Really Do MATTER

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As I stated in the first blog post, I really had not even heard about the BRCA gene let alone knowledgeable about genetics and honestly didn’t really pay to much attention to my family history. It was time to be an adult and dive in. I will blog more factual info on this gene later, but basically as told to me by my genetic counselor..”Its not a matter of IF its WHEN I will develop cancer”

When I hung up the phone after getting the call that I had in fact tested positive for BRCA, I was in complete shock and despair, tears immediately swelled in my eyes but somehow I kept them contained. You might as well have told me I had cancer.  I experienced so many emotions that day, actually for the next few weeks I was on an emotional roller coaster. I had shared my results with my  husband , my aunt, my mom, and 2 of my best friends that evening.I was still numb, I couldn’t process. Then the anger came and I was so pissed that I had even taken the test! Let me give you a background on my personality (I am OCD, I worry ALL the time, when it comes to health I am a pessimist, I worry about everyone and not myself.) I felt like I had been given a death sentence and I knew that my days were numbered. I will admit I did not go into this mentally prepared for these results, and several people have told me and I even watched a clip from the ‘Doctors’ that said when you do these types of testing DO NOT take them if you can not handle or prepare for the outcome. That was me in a nutshell I couldn’t handle.

24 hours later I couldn’t even talk about it, I didn’t want to talk about. I was truly depressed, I had these life decisions in front of me and no one could tell me what to do, it was all me. I am a very happy person on the outside  and most people will never know if I am struggling, I was struggling probably more than any other obstacle to date. I would go to work laugh, smile and act like not a care in the world. That night after I found out, I left work went home, went straight to my bedroom and broke completely down. I cried for 5 straight hours. I knew I had to deal with this and I knew that whatever avenue I took my life would never be the same. I knew that I had a husband and 3 daughters, I couldn’t be selfish. Those 24 hours I was living outside of “me” I wasn’t able to be a wife, mother, friend, boss.. nothing. I was lost.

I am a very spiritual person, I pray all the time! I decided that this is what was going to get me through. I also believe in the power of prayer and knew I needed prayer. I had started telling my coworkers, friends and decided to make “Facebook official” and got resounding support, I also learned at the moment that sometimes people say the stupidest things because in all reality they don’t know what to say! I also learned that nothing….NOTHING anyone says was helping. I also started learning a lot about myself, (you mean to tell me at 35 I still had things to learn about myself! WTH?!) I was learning more about my marriage, being candid I feared it wouldn’t or won’t make it, I was learning more about my friendships and just how strong they were, I was learning that I can’t do this alone.

My appetite was gone, my faith was wavering, my sense of humor was diminishing, my sense of self was hiding, and depression was on the horizon. I couldn’t eat or sleep, resorting to sleeping pills just so I could at least get a 4 hours of sleep and fearing I would create a new set of problems with codependency on sleeping pills. This isn’t the Kathy that I am, this shit has to stop. I can’t let this define me. I have to make a decision and move on!

 

 

 

New Chapter in Life

When just a phone call changes everything

brcaSept.28th,2016 is when my life changed forever. I will start from the beginning leading up to this day. March of 2016 I had discovered a lump in my right breast, I was a little concerned but kinda played it off and was going to wait until my yearly exam in September but decided to call my gyno anyways. They wanted me to come in within that week and have an exam, so I thought to myself “maybe this is a big deal..maybe I should worry?..what if?” I was sent for a mammogram in April 2016. Ball of nerves, I, by far was the youngest lady in the waiting room. I had several women ask if I had accompanied my grandma! Of course, I consider myself pretty modest for having 3 children so really do not feel comfortable.  I get called back and get prepared and am topless for about 20 minutes.. Joy! Joy!  A sense of relief as they tell you your results while you are there and I was cleared! Hallelujah! I got dressed, put on deodorant (you aren’t supposed to wear any for a mammogram) went to work with a smile and didn’t look back!

Fast forward to September 1,2016. I had my annual well woman exam and the lump had not gone away but in fact gotten bigger! But my mammogram come back good, so no worries, well that’s not the way that works. Doctor was very concerned and sent me to see a breast specialist and told me to really dig into my family history and that I should consider that this in fact could be cancer. Great! Freaking Great! Oh and I needed a laparoscopic surgery for possible endometriosis the following week, this appointment was a dousey!

I met with Dr.Frame (breast specialist) on September 8th,2016. He did a biopsy and ultrasound and consulted with me, again uncomfortable as I am sitting topless. I Feel like I should be on parade and waving my Miss America wave. We discussed family history, which I do have strong family history for breast cancer and my dad passed away at the age of 48 from pancreatic cancer, he suggested that I get tested for the BRCA gene. I consented with the notion of “sure why not, I mean I possibly can’t have this gene.” While I am filling a vial full of spit he is educating me on my options, I will admit that I truly was not concerned. I mean again I don’t have the same thing that Angelina Jolie has.

If the test is positive here are the options

Option 1: Do nothing and bury your head in the sand

Option 2: High Risk Screenings, if cancer develops (ovarian and/or breast cancer) hopefully we will catch early stages

Option 3: Prophylatic double  mastectomy  and either radical hysterectomy or oophorectomy

But again…no worries! I have a 2 percent chance for testing for this mutation!

I leave with a sense of relief. They said they will call with the results but not to worry in the meantime since I have no immediate family testing positive for the gene (yet).

September 28th,2016 4:14pm phone rings and I answer which for some reason I had the ringer on that day. My phone is always on silent.

“Ms.Williamson this is Bobbi from Dr.Frame’s office and I am needing to schedule you an appointment as soon as possible, are you available next Tuesday?”

I am sure I set on the phone in silence for a good 10 seconds before my reply “Yes”

“Your test results are positive, we need to discuss a game plan.”

SHIT………….