Tag: BRCA genetics depressed

Well we meet again.. scars, pain, drains, emotions and tears and more tears

lifecomesinchaptersLeave a comment

9 months  since the initial surgery, some days it seems like it was yesterday and some seem like it was another lifetime ago. My life has resumed the normal routines and monotony of daily life from the outside looking in, from the inside looking in, it’s been a difficult trek with unsteady terrains and my mountain has become even taller. 

Unfortunately the physical pain did not subside and the above paragraph said 6 months and I left it unattended because quite honestly I was exhausted dealing with this and was hoping it was my ending to this physical healing part but it’s not. My implants settled nicely and I was excited, around June I noticed that would come home and just ache, and then the aches would last all day, and then the only time I got relief was if I was wearing a sports bra.. hold on, I had the luxury of not having to wear a bra what the hell! I just prayed and let it go. I then started to notice that the implants were shifting into my armpits, yes I know natural breasts do this but again I am supposed to have nice perky stable breasts.  I also had a lot  of ripplin, it  got to the point to where I had no cleavage at all, I could stick my whole hand parallel between the implants, not cool. And did I mention the pain? I didn’t sign up for this! (But who really does “sign” up ) Honestly even thou I was disappointed with the look if it wasn’t for the actual pain I would have just left alone. 

I went to the PS and he said that I needed a pocket revision(common)  and some more fat grafting but kinda dismissed the pain, I felt like an idiot. So let me backtrack to my feelings these last 6 months. People are mean. Women are brutal.We as a species should be ashamed.I have been accused of doing all this for “attention” and that it was all “fake” and many of other judgments. I don’t care really but yes I have feelings so maybe I do care?!  If you are someone reading this that may be facing this journey, you will lose support as this goes on. I don’t blame anyone in particular, it’s human nature, we get busy, we don’t want to take the time.  It just is hurtful that the help, the gestures of kindness, the respect, the support all fade away almost as if no one cares to hear anymore, because this is a process!  This surgery that I had last week has been my most painful so far and didn’t even have some of my own family check on me.. I just got my feelings hurt but again this is raw emotion and it’s my own fault for not reaching out or asking. I know I have plenty of people that love me. It’s just the notion  that people have that I have done this before I can manage, I can’t. I still need help, my family needs help and I am in pain. 

Ok.. So with the need for surgery again, I bawled.. I have to start all over. I have to take off work, recover, learn to do things again. I dreaded telling people because I kinda feel like an old book that people have no interest in no longer. The pain.. is this my life? Am I always going to feel this way? Friday before surgery my PS calls me and said “Kathy, I have thought about you all week. We need to take a new approach and swap the implants with a completely different kind, manufacturer and size.” I had to pull over from wrecking I was distraught. What if this doesn’t work? What have I done? If I get an infection or my body rejects these then I am a 36 year old with nothing. I am not a vain person in the least, I am however, a woman. 

We decide to go with what is called gummy bear implants, it’s a textured implant so will be easier to adhere to my skin and not shift, the downside they are a lot firmer than the silicone. At this point whatever to get rid of the pain. Hopefully this does the trick because If not I am not left with many options. If you are going thru this, I wrote to be honest not to scare. In the big scheme of things, I am suffering a year of my life that I hope to be 50-60yrs more. I can do this, you can do this! 

I went in September 14th for the swap and fat graphing(so painful!) it was a 10 hour surgery! I went home that night as well! The dr did say he could definitely see why I was in pain (so glad to have some validity) scar tissue was so bad and the implant wasn’t adhering to the muscle and some of the muscle was exposed. My implants are under the muscle. 

I have all these little stitches (20) from the fat graphing 
My stomach from the fat graphing (hurts like hell, I can’t sit up) 

He didn’t open my old incision instead added so I literally have a scar all the way across 😦 and definitely feel like Frankenstein

The day before my surgery amazing how much your body can endure and change but your smile stays the same!

Much bruising all over and I did end up with 2 drains. The short end is it’s painful, there is nothing vain about it. I want to save my life and no one said it would be a walk in the park and it’s not but soon and soon is the million dollar question on what that means but this will be behind me one day just not today! 

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

lifecomesinchaptersLeave a comment

img_0293

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. 

img_0218
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.
untitled3.png
side view… not to shabby.. again its harder for me to look at I think..
 

img_0222
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.
img_0454
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!

img_0369
“The secret to change is to focus all of your energy, not on fighting the old, but building the new.”  Socrates

img_0292

 

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

lifecomesinchaptersLeave a comment

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!

img_0029
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

img_0030
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

 

img_0026
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.

I am just not ok…Reality has hit the fan

lifecomesinchaptersLeave a comment

download

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.

 

Genetics….They Really Do MATTER

lifecomesinchaptersLeave a comment

brca-jpg

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!