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The expanders are temporary…The scars are permanent. Learning to cope

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Well this may(may blog helpful advice to anyone facing this or helpful ways for people to help) be my last blog post until my exchange surgery scheduled for March 23rd,2017. I am hanging in there mentally and physically and hoping to return to work part-time this coming week. This last week I have been in a funk, like complete funk. I haven’t wanted to get out of the house, I haven’t done one load of laundry (I am a neat freak) and just didn’t care for a while. I had another hard cry the other day and I think it helped, its been hard for me to look at the scars not only across my breasts but on the side where the drains were and on the side of my breasts, they are forever a reminder. I do have complete peace with my decision but still makes its hard to adjust and never anticipated this much emotional repair.

My tissue expanders have a mind all of their own. I am told this is normal but as of right now  I have a hate relationship with them. I am in constant discomfort, they are lopsided which is noticeable in a t-shirt and this really messes with my mind. I can layer clothing but this is Oklahoma one day its freezing and the next its 75 degrees and I am a hot natured person! I am even more self-conscious around people I know because I feel like its human nature and naturally people  will look. Maybe I should just wear a sign that says “Yes, they are lopsided and I am aware!” haha. Again, maybe it’s all in my head and people truly look past my breasts? I don’t know all I know is how I feel.

I am  filled at 800ccs which is the biggest expander and implants available. I am done with fills!! Yeah!! Those suck, the nerves start to regenerate and wake up and it made me fatigued and nauseated. I still every now and then get nerve pain that feels like you are getting electrocuted. I am numb as mentioned before but hurts like heck and feel like my skin is raw, I am told this won’t go away as long as I have the expanders. The first month is the worse so that part is behind me. I was cleared to wear a bra to help push more to center, I am wearing a sports bra which helps with making more even, but I am a lacy girl and ready for my pretty lacy bras again (if I choose to wear one! Perks of implants I can go bra less!) Anything on my skin is sensitive so it hurts and will take some time to adjust yet again. Again, minus the chemo and radiation I had a full head on double mastectomy just because I didn’t have cancer doesn’t mean I escaped the pain. 

I was cleared at 6 weeks from my hysterectomy to  well dr words “make whoopee.” Glad that’s all healed and all but yeah “no thanks.”  We did switch hormones and that has helped tremendously, no more nausea and headaches, I noticed a difference in 2 days. I still am emotional and cry all the time, but I am told it takes at least 3 months to level.Fatigue and insomnia also  have to level out, so again we wait. I am so glad that I had both surgeries done at the same time, it is a relief not to have another major surgery ahead of me. I had great doctors! Did you know that when you have a complete hysterectomy  you have what is called a “cuff?” (don’t worry i didn’t know either)  the cervix is attached to the upper part of the vagina so when they remove that there is a hole so they have to make a “cuff” to hold all your intestines in place, so I will have yearly checks to see if that is all still tight and in tact. See how remarkable the human body is?! But man my poor poor body! 

I will see PS again in March and we will discuss what size he believes we can achieve and what type of implant and get all the details sorted out. I was so upset and devastated that when I met him the first time that he said he couldn’t promise me that I could be a full C cup, honestly at this point I don’t care! (I am not trying to be vain I am broad shouldered so that cup size fits my body type naturally )I just want it all to be done and these things out. Insurance said we could do surgery at the beginning of March but do to a trip to NYC we had already planned we are waiting until we come back, 2 days after in fact! So yeah me I get to go to NYC rocking the expanders! The exchange surgery is outpatient with a possibly 2-3 week recovery and drains again😪 but am told a walk in the park compared to what I have endured thus far. 

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This is the progress from the fills. I had fills at 2 weeks post (top pic) 3 weeks (middle) and 4 weeks (bottom) so you can tell cleavage wise the difference.
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side view… not to shabby.. again its harder for me to look at I think..
 

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Week one.. to week 6.. see how uneven they are?  But what an improvement! This is 800cc filled.. The left one actually needs to come down some and need to massage  daily to help break up some scar tissue. But those scars, man it will take some time. I remind myself this is nothing what the final product will look like. I am amazed at the human body and that we can reconstruct. He will nip and tuck all the extra skin, I have stretched well and he has faith I can be a C or possibly D cup.
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Normal looking in a sports bra but oh so painful against my skin!
 

Never in million years did I ever think I would have to battle something like this. It has taken all my courage, all my strength, all my dignity, all my faith and being this honest and transparent in my blog has been out of my comfort zone. I have learned that I am not defined by my breasts, no one is. I am not defined by my appearance  I am still working through this internal struggle and learned we hide behind clothes and smiles,  my friends and family still love me the same, and I love myself just taking some time to adjust. Once I get the implants it’s still a process, it won’t stop March 23rd. They will have “settle” we  possibly have to do some nips and ticks and some fat grafting (since I don’t have any tissue of my own you can sometimes see the outline of the implant so they will inject with your own body fat to fill in the gaps) so that’s a process and painful I have heard. Implants aren’t even permanent, they will need to be replaced probably atleast once in my lifetime, still debates on how long they last. I lost all feeling and won’t gain that back, so it’s my own skin but completely numb. Luckily my scars will be slanted enough that when I wear a swimsuit or Vneck shirt they won’t show. If you are reading and facing this journey please talk to your PS about this, don’t let them cut straight across. 

The third surgery is the nipple reconstruction but honestly I think I am going to say screw it and go to New Orleans and have Vinney Meyers do the 3D tattoos (they look freaking amazing!). I mean if I have perky boobs that I won’t have to wear a bra if I choose then why add headlights? Ha! And FYI nipple reconstruction includes taking some of your vajayjay….Hmmm yeah I think that has been through enough!! In the meantime as it takes a year to get in to see him and have to wait 5 months after implants anyways I will use some temporary tattoos, that way I can play with colors, shapes and sizes.. hmmm.. wonder if I can like add jewels or something 😂😂 sense of a humor… A MUST! 

Some of my immediate family has been tested since my diagnosis and we have one confirmed positive and waiting more results,so they will start their own journeys and I cried, I don’t want anyone to have to endure this! I will be here and that was one thing that I cried more about was I wished I has known someone personally that has this battle in front of them. This is why I started this blog in hopes to give insight , did you really know what all a mastectomy entailed? I sure didn’t! Also, to help even if it was one person and  my girls, I will print this off and will have it for them if they have to go down this road. They have 50/50 chance of having it themselves, as a mom that is heart wrenching to think about, but I will not force anything or even the testing on them just knowledge and honesty until they make their own choices. I leave with this insight, all this is temporary.. the expanders, the implants, the physical  pain, the recovery, tattoos, sports bras and  life it self. What is permanent is my scars, my faith, my love, my family, my true friends and my emotions and my decision. Don’t take life for granted and be thankful everyday for what you have!  Thank you all for the support by reading and following!

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“The secret to change is to focus all of your energy, not on fighting the old, but building the new.”  Socrates

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Insomnia, Emotional outbursts, weekly dr visits, constant pain, bloating, regrets, anger.. All = Par for the Course

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img_0025We had our first snow day in Oklahoma today! I know all the northerners are making fun of us as we speak but it prompted me to get out of the house to enjoy with the girls and  I had to run an errand to get my phone fixed, priorities! If you have been following from the beginning thank you for support as I ramble on some of these blogs as I stated from the start..raw emotions. If you are new to the blog, thank you for taking the time to read and I hope you gain some insight to this journey.

I am just about 5 weeks post (will be Monday Jan.9th) this has been my most emotional and hardest week so far, I know seems like I am traveling backwards and it should get easier as time goes on.  I know that my hormones are off and that will take time to adjust, but I think I am in the grieving process and as I come to my last fill of the tissue expanders and my date for the implant swap is set for March 23rd I now realize this is “Me” the new “Me”and quite frankly it sucks and I want to just be my normal Kathy. This week emotionally has been hard to  look in the mirror, to get out of bed, to look at anything positive, I feel as though everything is out of control, out of balance and I am drowning. I stress about everything and am stressed about my recovery, the unknown, finances as things are tight now. I am the caretaker of everyone! That is my personality and I just can’t do it, I can’t stand that I have to rely on other people.

Let me back up a few weeks. I went to the dr on Dec.12th for a 2 week check up with the GYNO and everything was looking great and I was healing from the hysterectomy well, I was amazed how  little pain I was in from that procedure, but it does take a toll.. Insomnia, fatigue, cramping, random swelly belly yep I just lost my breasts and I also look like I am 6 months pregnant…Ummm not fair! If you remember, I had a very hard time making the decision to have the total hysterectomy and this dr convinced me that it was my best option and I would be ok so on his advice and prayer and leap of faith I consented. My pathology report all came back benign EXCEPT my cervix which showed stage 0-1 cancer that had started at the back of my cervix. I had just had a clear pap smear 9/1 of this year! Holy Hell! This isn’t even related to the gene, they estimated with how aggressive this was that I would have only lived to be about 37-39 years old. I am 19 days short of turning 36. Well if this wasn’t a God thing I don’t know what is! Since I had the cervix removed during and nothing had spread I was good and cancer free.

Now onto the constant pain… These expanders that are on my chest are bricks and are constantly stretching my muscle and hurts! It hurts when I breath, it hurts when I walk when I move, the skin is raw feeling and itches but yet I have no feeling on the outside of my skin. They are oblong and so awkard looking in a tshirt, this is where I hate going in public I just want normal boobs! But this is temporary.. I go to get weekly fills to help expand and make room for the implant, I am broad shouldered so we did the biggest at 800cc in hopes to achive a full C cup, which was my orginal size. My skin is stretching well and looks like I will be able to get my desired size so there is some light!

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This is what the expander looks like that is under the muscle and has the magnetic port where a needle is inserted and they fill with saline

So as you can imagine as they fill more saline, the harder it gets and tighter anf heavier on my chest. Nerves start to wake up and I will just be honest it hurts like hell. I have to take it easy the rest of the day and the day after and take valium at night

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This is the needle that is used, they use a magnetic device that finds the port and will stick the needle in , its huge! But I feel the prick but that is all because the outside of my skin is numb

I have been getting 100cc each fill each week after the initial 200 and that was painful and do not recommend to anyone! No matter how high your pain tolerance is. I have one more fill left and that will put me at 800 and then I will let settle until the exchange surgery, per insurance guidelines have to wait at least 90 days . I keep reminding myself..Nice soft round implants are in store. This is at 600cc (pic below) and can finally see some cleavage, but keep in mind no projection and they expand high and wideimg_0027

 

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This is at 700 so you can see a bigger difference in just one week.. But again..constant pain!

 

This has more far more emotional than I could have ever expected, I have restrictions and limitations as these are “bubbled wrapped” per say if anything happens then I lose the chance of implants and may have to start over and there is a whole host of problems that can go wrong. I am ready to go back to work, ready to be Me. As I said I realized tonight that I need to take the time for myself, my whole body changed forever and I deserve some time to grieve and accept. I feel like I let everyone down because I haven’t been as strong as I thought I could be, because I just didn’t “bounce” back, most important I am losing the “Kathy” that I have learned to love. I know it will all work out, I know that I will be ok, but I also have accepted that I am not ok at this moment. I am tear filled as I write this because anyone that personally knows me, knows that this is not me. I will say that I am proud for  being transparent and sticking to my promise to be honest throughout this whole ordeal even though I am a private person and it is way out of my comfort zone, but if it helps one person or my kids later on, it’s all worth it.

 

“Every storm runs out of rain” and I am ready for mine to have the rainbow at the end.

Recovery and Reality

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This is the most intimate and most nervous post to date as the somewhat unknowns are over and well it is indeed reality. It’s the beginning of the new me.

I was so nervous the morning of surgery , we arrived right at 5:30am. In fact Nick got there early and I made him wait in the parking lot right up until the time. I prayed and walked in and checked in..OK this was it! This is real! We get called back into the pre op room, I get my gown and asked to change and give a urine sample, anyone else have a hard time making it in the cup? You would think as a woman and mother of 3 I would be a pro but nope I miss every time and pee all down the cup ha!

I changed into my gown and took off my bra for the last time, why did I even wear one? Ha! IVs were started and surgeons started coming in..I was amazingly pretty calm, the plastic surgeon came in to mark me and that’s when it hit ! I said goodbye to my entourage and held back the tears, they gave me some oral anxiety meds but I don’t think in time to take effect. Promptly at 7:03 they came to wheel me off to the OR I said goodbye to Nick and still held back the tears.

The OR is cold and so overwhelming, everyone keep asking me how I was and was very friendly I get transferred to the operating table and I remember seeing my name and all my info on a whiteboard and thats all she wrote…I was out!

Woke up in recovery and was confused and in pain! Oh the pain! I remember thinking the recovery nurse was handsome, hope I kept that comment to myself! They had a hard time managing my pain, I was in and out of it for 3 hours before I was moved. When I was moved to my room it was an 8 hr surgery and 3 hour recovery, long day for those that had to wait , it went fast for me! I am a hot natured person as it is and then my body was thrown into straight menopause, not a good combination. My room was so overwhelming hot! It pissed me off and I immediately let everyone know about it, the poor nurses and maintenance man! I HAD awesome friends that went to Home Depot and bought me a fan!! Life saviors and I needed my hormones  which there was a mix up and I didn’t receive the hormones until about 24 hours later.

I don’t remember much the first 48 hours, I was bandaged up and didn’t want to look. I was in so much pain! It took them a good day to manage the pain, I would have rather give birth without an epidural then go the pain again! I was released 2 days later and was so ready to go home, well I thought…

I could not get comfortable at all, the pain was unmanageable and these drains are such a pain! My sis was in town for the first 4 days and I don’t remember much at all! The first night I had woken up and went to the restroom, this process to even get up took a good 20 minutes, I couldn’t move at all! Nick was passed out as he hadn’t slept in about 48 hours. I needed his help and he wouldn’t wake up! I wallowed on the bathroom floor for 2 hours in pain and self pity, I decided for the first time to look and I bawled so hard. The reality was indeed reality and I looked disfigured and in my state of mind could not see  the light of the tunnel at all. The grieving process officially begun as the pain meds wore off.

Nick woke up and helped me off the bathroom floor, gave me some meds and held me and let me cry. You have to have so much support to go through something like this, and it affected him. There was no way in hell he found me attractive and I told him this to which he replied “I am in love with this woman named Kathy not her breasts” so I cried some more.

I had more range of motion than I thought and the drs thought I would have but I could not move, my whole body couldn’t move, I stayed in bed for the first 9 days. I spent 2 days in self wallow and pity and depression. One day at a time and I am sure I was entitled to a few dark days, after all I felt like a monster and in constant pain. And again if you still think this was or is a “boob” job you are wrong.

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These are the drains that I had on each side to collect fluid from swelling. I got one on each side removed last week and hoping to get the rest gone tomorrow!

The drains are a complete nightmare, you can’t slept in any position other than your back and they pull and they hang well below your knees and well don’t get me started on fashion. They are drained daily and bandaged at the stich.  And well here is my reality below.

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I had a skin sparing so I got to keep my own skin but not nipples. Skin was pulled from my side to help with the reconstruction. This is about 1 week post so bruising and swelling was down.

These are the expanders that are under my muscle and I have fills every week to recreate the breast, the expanders are oblong to help stretch the skin to make room for the permanent implant which I will get in March, yes another surgery.

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This is my breast that had the lumps removed, so ugly looking! The scar will always be there but will fade in the years come. Nipple reconstruction will happen 5 months after the implant surgery

The ugly ducklings that will become the swan, this is what I am living with for the next 3 months. My Plastic surgeon said that once the ROUND soft implants are put in they will look and feel natural and will not look like this at all! The expanders hurt like hell! No way around it, they are hard as a rock and sometimes its hard for me to catch a deep breath. had my first fill and there is no feeling, there is a port that they insert a huge needle in and fill so many CCs each week and they do start looking more normal everyday. I have no projection as they are oblong so I still look flat. I am ok with my new reality, in fact I will show anyone that wants to see, I have no personal attachment to them right now.

 

I am doing good, I am still 3 weeks post and I get so tired easy and I over do it and boy do I pay for it! I am doing good mentally as well. It is hard and still the hardest thing to date but looking forward to all this to become a memory. I got a necklace that said “choose courage” I love it because it did take courage and I understand just how strong I am now! I also understand that women are more than boobs, I am still me, I still have the same personality, the same sense of humor, the same heart and soul. I will admit I am looking forward to perky boobs and would be ok if I am considered a “MILF” 🙂

I chose courage.

 

 

 

 

 

 

 

 

The day has come…

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img_5237As I am writing this I am laying on the couch waiting to leave for the hospital. I have to arrive at 5:30am for scheduled surgery at 7am. This past week has been a flood of emotions, and emotions that I couldn’t even contain or keep up with myself. Literally fine one minute and then not the next. The outpouring of love and support was felt. I consider myself a giving person and to be on the receiving end is new territory for me. I am an independent person as well so to even acknowledge that this is huge and I will need help was a hard pill to swallow, but over the last week I have let go and accepted, and have never felt more love and support. That gives me hope and faith that this will be ok.

Earlier this week I had a breakdown as my husband left to go hunting (he needed to decompress and get away as well) during this process we forget that not only are you affected but all your loved ones are. I thought I would be ok, but found myself once again bawling and thinking there is no way I can do this! Am I making the right choice? Should I just have one surgery done? I just needed him to hold me and tell me that everything was going to be ok. He hasn’t been able to really find the “right” words to say to me but then again I have learned there are no “right” words, I just needed his arms and support and that’s what I have gotten. That’s the best gift you can give anyone.

I talked to a few people over the last week that quite frankly just don’t get it. They won’t. Don’t waste your time explaining your emotions and reasonings, I promise until you have heard the words “positive” no one truly understands until they have been there, and that’s ok. I didn’t realize the extent myself. Just don’t say stupid shit, that’s my advice because we can’t tolerate it. Just if anything say “I am so sorry” that’s all! I can write a whole blog about the stupid things people have said to me!

I was lucky and my sister from Houston flew in to be with me a few days and more than anything just moral support, I picked her up from the airport and we had dinner with my best friend as well. My other best friends stopped by just to say hi and spent about 45 minutes with me, I had people stop and pray for me at church yesterday, the love was outpouring and I am telling you that’s what gets us through this! I was able to get through the day without a breakdown. I laughed last night and took a Valium and went to sleep about midnight and prayed.

I woke up at 2am to take a shower, my last shower with this body. My last shower with my own breasts, that’s what got me. There is a sense of loss, and any woman should be able to understand. And any man that can’t should just imagine them losing their well you know.. manhood… 😂😂😂  I cried for about 10 minutes in the shower, you have to use this surgical  soap and man it smells of pure alcohol,  I got out of the shower and not to be to personal but just held them, felt them, they are mine and I am losing them. The unknown is scary as well. I won’t know how they will unltimatley look or feel. I also will have to adjust to no nipples for atleast 6months, this all plays with you mentally. I have lost my appetite over the last 3 weeks, all normal I suppose. I have learned that I do in fact have anxiety, but again who wouldn’t right?

People seem to forget that I will have a total hysterctomy, I think it is my fault since I talk about the breasts so much, I am not as attached to my uterus and ovaries as they have caused many problems, I am scared of hormones, sex drive (I mean come on I am still in my prime haha)  and weight gain and just the unknown.

I am calm as we speak, i do have a headache but maybe thirsty or lack of sleep,I blowed dried my hair for the last time for awhile, since I will have no range of motion for a few weeks, placed a patch behind my ear to help with the nausea from the anthesia, and  put on my bra for the last time in I don’t know how long and honestly I may never be able to wear this one again, as I mentioned it’s the unknown that gets me. I am not vain, but it’s part of my body. I realize that this is my choice, but if I don’t do it now  and wait until I am older or perhaps when I do have cancer, and the drs said it will happen. I may not recover as well, I may not have any options for reconstruction, even thou I don’t want to do the tissue expanders route atleast I have an option. It will take 2 more surgeries after this one and a few nip and tucks and will never be the same but I will be able to continue to be here and be a mother,wife, aunt, sister, daughter,niece,cousin,friend,teacher,mentor. My dad died young at 48 from cancer. I, god willing will not leave my kids motherless at a young age. Cancer sucks! Wish my luck and prayers. We are headed to the hospital where they said they would give me something for anxiety! I know I will be ok in the long run, just lots of unknowns and time, this isn’t a quick recovery or quick fix. But I have my big girl panties on as they speak (and honestly have bigger ones on to help with the swelling after the hysterectomy!! Haha) sense of humor is a must!

Today is the day…

 

 

 

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..

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

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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………….