Tuesday, October 18, 2016

Mastectomy (part 2)

Whew!!! What a ride this year has been!!  I would have to say that this year certainly may be one of the hardest of my life.   2013 tops the list.  That was the year mom died, and the my sister was in the hospital in a drug induced coma while fighting for her life against pneumonia.  This year has also been on for emaotional, physical, and spritual battles.

I am writing this blog as part 2 of the mastectomy blog.  I wrote part one at 39 days post mastectomy.  By the time I wrote that blog, I had already had another surgery.  Documenting this journey is important because later I can look back at how I felt, where I was emotionally.  I know that this gets easier...it's begun to get better, but still have a ways to go. 

Three weeks post mastecomy, I was able to wash my own hair.  It was a much slower process, but I could do it.  I was thrilled to bathe myself, and wash my own hair.  I bought some fancy expensive salon shampoo because I deserved a little treat, right?  After a couple of washes, I noticed that my left breast didn't look so good.  The skin was turning black near the incision.  I texted a picture to my doctor.  She said to come in to the office.  Some of the skin was dying.  I knew this could happen.  There was many girls on the BRCA FB page that this had happened to.  She put me on some high powered antibiotics.  I was unable to take a real bath.  I just sat in waist deep water, as my breast were not to be submerged.  I was sitting there one night, taking my bath and was reading the bottles in the bathtub.  One of the ingredients on the fancy new shampoo was aloe.  I'm not alergic to many things, but aloe is one of them. I messaged the doctor immediately to let her know that I thought this might be an allergic reaction to shampoo and not an infection.  Boom! Just like that I was scheduled for surgery.  March 10th, I went to the hospital.  I can't recall who was there with me, but I want to say it was Granny, Chelsea, Greg and 2 of my close friends, Loris and Anita.  I went to pre-op after a heated argument in the lobby with the insurance company over my name.  Always a pain to explain the reason for all the first names. I just tell people jokingly that I was born in the 70's and that my mom was on a lot of drugs so I have lots of first names. :)  Anyway, I went back for surgery and chit chatted with the nurses before they gave me the sleepytime meds. One of the nurses was the same one from the first surgery.   When I woke up, I felt much clearer than I did after the first surgery...this time I made sure to tell them not give me much in the way of anesthesia.  I don't take any meds, so I'm super sensitive to most of them.  My chest hurt pretty bad, and I felt really cold. It was not a tolerable pain.  The doctor came in.  She told me that they had to take more than they were anticipating.  I had had an allergic reaction and my skin was dying.  The expander was not affected and I was able to keep it in. She had to remove my left nipple and a lot of skin. The skin issue was not really a big deal as I was hoping to be smaller busted after all of this surgery. Before all of this, at my heaviest weight of 190, I was an E cup.  At the time of the mastectomy, I was 147lbs with a bra size of  DD.  During this emergency surgery, they cut both sides again to make sure the same problem was not present on the right side as well.  Each side was going to have to be packed with lubricated gauze, and then wrapped each day.  I wasn't able to wrap myself.  Lots of people came to help, and Greg was able to stay with me quite a bit and help me with tasks.  I was again not able to bathe, reach up, lift, wash my hair, or bend over because my chest muscles were sore all over again.  I was still sleeping in the recliner that I had purchased just before the mastectomy.  I still had two drains.  The drains were probably the worst part of all of it.  They pulled at my skin constantly.  I could always feel them.  I had to pack them as well to give them a little cushion against my skin.  The stiches would poke me if I moved wrong, and they are just gross to carry around with you under your shirt.  I had to end up having two of the drains for 8 weeks.  That's quite a bit longer than was expected, but I kept having fluid build up.  Three weeks after the emergency surgery, I had my first fill in my expanders.  It wasn't terrible.  I was sore for about 3 days and worked from home. She put 50ccs in each side which is a small fill.  Not terrible.  A fill is where the doctor puts a needle through the breast and the port of the expander to strech the muscle out slowly.  I would need to have several more of these.

One morning in early April, I woke up at 4am for work.  My hand was against my right breast and was wet and sticy.  It was dark and my immediate thought was that I was bleeding.  I got up and went to the bathroom to find that it was a clear fluid.  It looked as though it had been happening for a few hours based on the amount that was coming out of a tiny hole in the incision.  I packed the insision and went to work.  I sent a message on the web portal to my doctor. She responded fairly quickly, and wanted me to come in that afternoon.  She stiched my where the small hole was.  She put a waterproof wrap on it, so that I'd be able to shower.  A week later, I had what would end up being my last fill.  I was in a lot of pain.  I was having a hard time controling the pain.  Later that month, an emergency came up and I was probably not really taking care of myself the way I should have.  I was pushing my limits.  I was not at home for a few months after that. I was still doing photography sessions...which may have been what put me over the edge.  My chest seemed to never stop cramping.  I was contantly in mild pain.  I was not taking pain meds so that I could drive.  I was doing a ton of driving which I also probably shouldn't have been doing.  The doctor decided to let me settle down with the amount of fluid that was in the expanders.  Weeks later, I was sitll in pain.  It was just not managable.  Expanders are heavy and very hard.  The material is thick, the port magnet is heavy.  They poke you on the inside, they ripple, and they are just absolutely uncomfortable.  Bending over would hurt tremendously because of the weight of the expanders being behind my muscle.  My muscles had never had weight underneath them.  It was similar to getting charlie horses in your leg...only these were on my chest.  Simple tasks would cause these horrific muscle cramps. 

On May 31st, I went in for my appointment thinking I was doing another fill.  After examining me, the doctor decided that my body was just not doing well with the expanders and my muscles were trying to push them.  We were going to go back in to surgery.  I had 3 days to prep.  That was on a Tuesday, and I was on the operating table Friday June 3rd for exchange surgery.  At this point, I was ready to be done.  There had been so many complications.  The exchange surgery was removal of the expanders and placement of the permanant implants.  The implants would much bigger than the expanders because we did not finish the fills of the expanders to stretch the chest muscles. I knew I'd be in severe discomfort.  She was going to have to stretch the muscle when putting in the implants.  The left pectoral muscle was not cooperating and needed to be cut (not sure who told me that) to fit the implant underneath.  The muscle was just over worked and very thick.  I had been doing photo shoots, back to work full time, driving, and household tasks.  I think these things led to that muscle being overworked.  After surgery, she did tell me that she could tell I was overdoing it.  Maybe she didn't know what "regular life" was for me when she told me that I could get back to it. 

Here I am, eight months post mastectomy and four months post exchange surgery.  I still have a little bit of discomfort.  The implants have settled, and aren't as stiff as they were.  The muscles are relaxing and getting used to having weight behind them.  Chest cramps are less often.  I think it's been 2 weeks since the last one. I only have one nipple.  It bothered me at first.  There was a time when I couldnt' bear to see myself and I covered the bathroom mirror with wrappng paper.  This wasn't just a physical challange.  This was an emotional beat down.  I remember the words of someone I used to care about.  They said, "You're making a big deal out of this.  It doesn't matter what you look like anyway, you wear clothes that will cover it.  You'll be fine".  Yeah?  Hahaha! I have winking boobies!! I've come to think that's ok.  It's kind of funny.  Before I knew that I was having a nipple sparing mastectomy, I told my best friend, Nat, that we were going to go to Schlitterbahn and I was going to lose my top and start yelling "Who has my nipples?? Have you seen my nipples??" *shrugs* It's still funny. 

I will eventually have both nipples.  I'm not in a hurry for the left one.  I have the right one.  I have some feeling in both breasts.  It's minimal, and kind of tingly, but it's there.  The nerves are still rebuilding.  I am still recovering.  Monday I will go in for the reconstruction part.  This is the part where she will make them look and feel more real. I want them to be more jiggly like natural breasts. I want them to look like natural breasts.  I have always been blessed in the fact that I don't scar poorly.  I'm only 4 months post exchange and the scars on the left are already white and thin.  The right side has a little redness in the middle of the scar, but it has already begun to fade on the left side of the right breast.  You have to look closely to see it.   I'm so close to the end.  I'm so close to being done.  I have also decided that the oopherectomy is just not right for me right now.  I will do ovarian scans for now once a year.  There is no way to detect ovarian cancer.  My OB/GYN said that the scans are better than nothing, but not a method of early detection.  I'm just not ready right now.  Next year may be the year, and I may wait ten years. Putting it out of my mind for right now has brought great relief. Huge.

I am thinking next year I will have her rebuild the left nipple and then I will go get my Vinnies!  I blogged about that previously.  If you didn't read that one then here is a link to see Vinnie's work. http://www.today.com/video/tattoos-for-breast-cancer-survivors-finding-vinnie-myers-feeling-whole-545692227516 I will just use some vacation time next year, go see some sights, and get my tattoos while I'm there.

I don't really have bad days anymore.  I have moments that I am overwhelmed by all of this, but not like before.  I couldn't have known that it would take so long.  I couldn't have prepared for all the complications.  I'm confident that God knows what He's doing and that the timing of all of this is perfect. I didn't blog much during this process just due to a lot of craziness that life brought.  I'm thinking the next 6 months (ish)...life will start becoming more of what I'll be able to call normal. :)






















Friday, June 17, 2016

Broken

Life isn't always what you picture.*Sniffle*
No one looks the way they picture. As a photographer, I feel that I edit people to look the way that I see them. The way that they see themselves. As a photographer, I have edited tens of thousands of pictures. I've seen every body type. I've seen double chins, pooches, flabby arms, chubby thighs, freckles, lazy eyes, and non-symmetrical faces.
In February of this year I had a double mastectomy. I posted an earlier blog that was titled part one. I am not sure that I will do a part two. Right now I am trying my best to hold on. I am trying to hold onto life, hope, love, Faith, and myself.

I look at myself in the mirror. I see myself every day. Naked. There is only one person that sees me naked other than myself. He loves me for my heart, not for my body. I can't help but think that that's a good thing. I think that my body looks horrific. I hate to look at myself. My breasts are scarred. I had to have reconstructive surgery two weeks ago. I don't love the outcome. I know that I am not finished with plastic surgery. I do know that I stand in front of the mirror every single day after my shower, And the woman I see is not who I feel that I am. My life has always been scarred. I had a rough childhood. My teenage years were  nothing less than disastrous, embarrassing to say the least. Maybe this is the way my life is supposed to be, scarred. I can't help but think that if you do not go through things in your life that you can't help others later that are going through the same thing. Right now I look at myself, naked, and I hate my body. I have my breasts. They are scarred. They are the correct shape. I have one nipple. I hate the way I look. I want to say that I should have pride knowing that I won't die of breast cancer the way that my mother did. I should have pride knowing that my children won't have to see me the way that I saw my mother. I should have pride knowing that I will not die from breast cancer. I should have pride knowing that I made the right choice. I should have pride and no way that I am not identified by breasts.
As a woman, it is hard to hate your body. There is one girl in particular that I know... She had weight-loss surgery. She had several surgeries to help her lose weight, or to make her body look better. She is still not happy with her body. She still cries. The loose skin bothers her. Every woman hates her body. I'm thankful for the small things in life but I am a woman... I hate my body. It's hard to live like this.  This is NOT something that you can explain to someone. This is not something that people in your day-to-day life will understand. I can only relate to people like me. I can only relate to people for BRCA+ like me. I know I still have a long way to go on reconstruction. I know that my breast will not look like this forever. I know that I will get used to not having any sensation. And know that I will get used to the way they look.
I'm thankful that God has given me life I am thankful that God loves me. I am thankful that God hears me. And I am thankful God knows the desires of my heart. For those things alone I have thanks.

Monday, March 21, 2016

Double Mastectomy (part 1)

I think it's been two months since I've blogged.  I guess I haven't had much to say.  I have wanted to blog...mostly to record my journey through the surgery.  I was going to just keep it as a draft in diary form i.e.: Day 1, Day 2, etc.  I had no idea what was in store for me...that just wasn't realistic.

January 11th was my date I was scheduled for surgery.  I didn't like the date because it was the date that my niece passed away.  I didn't want to take that date from my sister, but it was the dates that the doctors chose.  My sister didn't mention anything about the date or that she was uncomfortable with it.  January 11th was a Monday.  The week prior, we had been playing "what if" game.  What if Darla wasn't at work.  That didn't go over well at all.  My assistant ended up getting sick Wednesday.  He threw up and was running fever.  I had to send him home.  I could not risk getting sick a few days before surgery. So, my office went into over load with him being out.  No biggie, I've done it before many times.  He was out Thursday and again Friday.  Thursday I had a scratchy throat, nothing major.  I just felt that I needed a drink.  Friday my assistant called to let me know he went to the doctor because he felt he was close to death (he actually said that), and he was diagnosed with strep. Lovely.  It was around 3pm, and my doctor's office was about to close.  I called and spoke to the nurse.  She said that I needed to go to the closest Scott & White clinic and be tested immediately.  I left work right then to be tested.  She kind of frightened me.  They did a swab, and while waiting on the results, the doctor said my throat looked fine, not pink and no pus. Good news. The nurse came in to tell us that I tested positive for strep.  What?!?! I felt fine.  Even the doctor said, "Really?" and proceeded to check my throat again.  I called the surgeon's nurse back to let her know.  She said that surgery would have to be cancelled, and she would let the surgeons know and get back with me on Monday.  Monday morning I get a call from one of the surgeons that they were all waiting for me in surgery.  I told her what happened...she was very mad at that nurse.  The nurse never informed anyone.  I also never got sick from strep.  I only had a scratchy throat for 2 days.  No, fever, no cough, nothing.  I rarely get sick anyway.  Maybe a cold once every year or two.  I've never had pneumonia, bronchitis, strep, the flu, nothing.  I rarely get sick. I've only had food poisoning once...ick...I wont be blogging about that. Anyway, so...cancelled.  The surgeon said she call me in a few days to let me know when we would reschedule.  It was two surgeons, two physicians assistance, an anesthesiologist, and an operating room that had to be rescheduled. 

Rescheduled for February 11th.  The day after the anniversary of my mother's death.  This was going to be hard...I already missed my mom and wished she could be there. I was having a hard time with that prior to surgery.  So, there the wait and the countdown began again. 

The week before (at work) went flawlessly.  I had my list of caretakers on my fridge, phone numbers, emergency contacts, emergency medical contacts in Taylor, food was stocked and meals were premade.  Two weeks of 24 hour care, and I felt as prepared as I could be.  I am a member of a FB page for people that are BRCA+. I had my essentials for the hospital, bath char for the shower, new removable shower head, all laundry done, and I bought a recliner (and do NOT picture some nasty Laz-Y Boy recliner in my house).  I had every thing on the prep list.  My surgery was scheduled for a Thursday so I was able to work the day before and keep my mind busy.  I wasn't scared.  I was nervous.  I've never had surgery, never been under anesthesia before.  I mean, come on...I had my wisdom teeth pulled on my lunch break, and gave birth to Chelsea with no medication. I really had no idea what to expect. I have a high tolerance to pain and I have a great immune system.  Surely, I would be like some of the girls on the BRCA page that were back to work in 2 weeks.  No problem.  Well....that's not exactly how that went.

Surgery day:  I was scheduled for 10am I believe.  I had to get there an hour early to check in, do blood work and pregnancy test.  Ummm...ok. My granny drove me there.  My boyfriend was there, my daughter, and three of my close friends.  I went back to the pre-op room to get naked.  One of my surgeons came in, and drew lines and measurements for the surgeon that was going to actually cut me open.  I was nervous and cold.  That was it. Everyone came in a got to see me before I went back.  The only thing I remember was a lady that was wheeling the bed to the operating room.  I jokingly said, "You know this is my last time with boobs, so I'm going to flash everyone we see."  She quickly responded, "Oh, please don't do that!".  She left her sense of humor at home that day, I guess.  Meh.  Anyway, the surgery took 6 hours. All breast tissue was removed, my muscle was lifted from my chest and expanders were placed underneath.  OH MY GOSH!!! I almost forgot this part:  back in January the Reconstructive surgeon told me that she was going to do a different kind of incision and I would get to keep my nipples! I remember I wrote a blog last year or year before that was title "Will I have nipples".  So I was excited that they were going to look like I've always looked...well, not at first, but eventually, and I'd have my own nipples!  Okay, Okay, back on track.  I told the anesthesiologist that I didn't need a lot.  I told him that I don't take meds so I'm super susceptible to ANY medication.  Uh huh.  He didn't listen.  It took me 2 1/2 hours to wake up after surgery.  I don't remember the recovery room or anything about it really.  When I woke up Chelsea, Brian and Greg were standing there looking at me.  Awkward.  They had actually just walked in at the right time.  Greg couldn't stay long.  He had his kids and they weren't allowed in there.  Brian and Chelsea stayed the night with me.  Throughout the night I was given Norco (never had it before).  It made me sick.  I would dry heave every time I stood up.  The next morning the doctor (Her name is Staci) came in and changed the meds.  No one had notified her that I was dry heaving which hurt my chest muscles tremendously. She changed me over to Tramadol for pain. 

Lets change gears for a second.  Lets talk about the nurse who must hate her job.  I can't remember her name, so we shall call her Shirley. She was the nurse when I first woke up.  She asked me if I wanted a drink. Yes. The cup was full of ice water and the lid is not leak proof.  I was sitting up but not in an upright position. She leaned the cup towards me and poured water on my chest.  I tried to take a deep breath, but hadn't learned to do that yet without the chest muscles.  She calmly looked around and said "hmmm. No towels.  I'll be back."  I am still trying to breath and I'm there alone during this time. Shirley casually comes back in with a towel and PATS my CHEST!! Holy Mary Mother of God!!!  Later that evening my chest was hurting on the left side pretty bad, so Shirley gets an ice pack.  Sounds good to me. Well...she fumbled it and accidently dropped it...on my chest. When I went to the bathroom (to pee) Shirley didn't wipe me and I couldn't reach.  Uhhhh...ok.  I mean, hey I'm not wearing panties, so maybe air dry would work.  Ick. My daughter complained on Shirley.  We didn't see her again.  Praise Jesus!

Back to the story: So the next morning the doctor had changed me over to Tramadol for pain.  Apparently the nursing staff thought this was at my request.  I thought one of the IV bags was pain meds, so I never said a word.  I was just in a lot of pain.  My chest felt tight.  There was a lot of pressure like someone sitting on me.  It was difficult to take deep breaths.  The pain in my chest especially while trying to sit up was excruciating. You have to learn how to use other muscles to assist you. I also had four drains.  the drains are suctioned bulbs on the end of a tube to pull fluid from my chest.  I had two on each side.  They were wired into my skin about 4 inches below the bend of my armpit.  They hurt, but it wasn't too terrible.  I just couldn't reach or twist in any way. When the doctor cam in at 4pm, she looked in the computer and realized they hadn't given my pain meds all day. Nice!! So, she put me on the lowest dose of Tramadol and 1/2 of the lowest dose of Valium (for muscle spasms). She told me that everyone says the 3rd day after surgery is the worst, but for me it was that day.  12 hours out of surgery and no meds.  I was thinking that was awesome because now a low dose of meds would be great.  I hate medication.  I do NOT like putting that junk in my body.  I wanted to get off of those ASAP which would be easy with a low dosage.  Once on the meds, I was extremely uncomfortable, but I could wipe myself and slowly get out of bed. I am short, so the bed was an issue from the get go.  God didn't give me very long legs. The next day at the hospital was just baby steps, getting up, getting a drink, reaching, breathing exercises, and just general movements.  Chelsea and Brian were there the whole time.  They hospital even brought in a roll out bed for Chelsea.  Brian slept on the couch.  I had to stay an extra night to make sure the meds were sufficient. I went home Saturday afternoon. 

to be continued....

I am writing this blog at 39 days post op from Double Mastectomy.  I am only 11 days post op from emergency surgery which I will explain in the next blog. 

Sunday, January 3, 2016

Our memories go with us

Sometimes I think too much. I'm alone a lot, so I have plenty of time to think. We've all done it. We've all sat too long, dwelled on everything, anything too long. 
I plan to put my house on the market in the next few months. I am hoping to do so by this summer. I should be all healed up by then. Some people don't think so, but I refuse to be down that long. I'll shock everyone with how fast God heals me after the surgeries. Watch and see. Anyway...I need to clean stuff out. I really wanted to get it all done before the first surgery but that's next week.  Procrastination is a hobby of mine. *wink* I was going through some boxes in the guest room. I saw an album on top that I had never seen before. It was blue. My name was written at the top. The curiosity in me was overwhelming. I took off the rubber band that bound the album. The first group of pictures was a place I didn't recognize. I continued through the album recognizing people from my childhood. One person I recognized but have never met. He passed away before I was born. I continued to turn the pages only to see so many people that are gone. These are people who were my family. People who cared about me, loved me. I have no idea where this album came from. I was flooded with memories of these people, my family. There were only five people in the entire album that are still alive today. Five. Who will remember all of these people when I'm gone? Our memories go with us. I thought of my granny. My heart aches for her. These were her siblings, her aunt, her parents, her daughter. She wouldn't like me to spread any of her business...or to blog about it. I love her so much and I can't imagine what she has had to endure. Just looking at this one album has really tugged at my heart. I'll cherish this album forever. I still have no idea where it came from. I think my name written on the front is Granny's handwriting. I can't remember her ever giving this to me. Isn't it cool when God gives you things, or let's you see them? At just he perfect time. His time is always perfect. 
I'm the baby in the picture attached. My mother is holding me. Granny is behind mom. Grandma and grandpa (granny's parents) are to the left. And to the right of my mom is my uncle Rick. He was granny's brother. Only me and Granny left from this picture. I'm so thankful for my Granny. I have no idea where I'd be if it weren't for her. The greatest person I've ever known.