BRCA surgery hysterctomy masectomy faith cancer breasts tissue expanders

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

September 21, 2017September 23, 2017 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

January 21, 2017January 24, 2017 lifecomesinchaptersLeave a comment

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.

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.

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

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.

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!

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

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

January 7, 2017January 7, 2017 lifecomesinchaptersLeave a comment

We 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!

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

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 wide

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.

The day has come…

December 5, 2016December 5, 2016 lifecomesinchapters2 Comments

As 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…