Saturday, January 26, 2013

Bed rest


I've had a lot of time to sit around and think. After surgery, it took a lot of sitting around and letting everyone ELSE do things for me.  At first I was so completely drugged up and out of it that I didn't mind. I was hardly aware of where I was or where I was sleeping. It's been over a week since my surgery and I have gained a lot of perspective over how hard this has really been.
When I seperated from my husband, it took a lot of work to become a very independent person. I had so much drive and determination to truly be happy with myself and do everything without the help of a boy. I have worked at this consistently since 2010 and made it a high priority to accomplish this goal. I have become a very independent, strong woman and have worked very hard to be able to provide for myself and my kids and be happy with my life. I love who my life's lessons have turned me into and the growth I've received from them.
After my surgery, I couldn't move my arms more than an inch from my body. My chest felt like it was cracked into peices, my back felt like it had been shattered and my breasts felt completely numb. It hurt to take deep breaths, and every movement was a sharp spark of pain in a new different area. Even getting up off of the couch without using my arms proved to be extremely difficult. I couldn't reach backward, therefore I couldn't pull my underwear down to go to the bathroom by myself. I couldn't raise my arms to wash my hair, I couldn't raise my arms to brush my own teeth, and I couldn't hug or hold my children. My kids came by and would ask, "Momma can I have chocolate milk?" and I would have to tell them to ask their grandpa. I couldn't change Colton's diaper, I couldn't hold water to my mouth to take my medication. I realized quickly how much help I really needed after this surgery.
For the first couple days, I didn't mind the extra company and the time to heal. After awhile I started to go crazy sitting in my house all day. I had stared at the tv for too long, gotten sick of books, and sat in the very same place for one week, with the exception of using the restroom. I felt so lost, so disappointed that I couldn't just hop in my car and drive to the gas station. Not only was I on pain killers, but I also had two drains coming out of my sides under my armpit, draining blood near my breasts. One was under the fold of the bottom of the breast, the other was under the muscle on the top of the breast. I couldn't lift my arms or more fluid would drain from the site. This would mean I would have to wear the drains longer. I could see the blood and fluid increase everytime I did too much, everytime I didn't rest. I knew what the doctors wanted, but craved to be a normal person.


I felt like a parapolegic person. I had a mind, I had a body, but I couldn't use it. I was stuck in the same place unless someone helped me to the next. I had given up all of my independence and freedom. I am so extremely thankful for all of the people who sent cards, gifts, called and texted, and especially for the people who visited me and helped me through this time. You are all an inspiration to me, and I couldn't have done this without you.
Nine days have gone by since surgery. I am so thankful I can move my arms up to brush my own teeth and wash my own hair. And I am thankful for some peace and quiet considering I can get my own food and drink. Two more weeks and I'll be starting chemo: a whole new journey for me to begin.

Friday, January 18, 2013

Surgery

I drove to the plastic surgeons office to get marked for placement of the expanders and placement of the incisions. Then I arrive at the hospital at the beginning of my very long journey. I'm wearing my pink cheetah hoodie, my black and pink metallic zebra pants, and my all pink sequin uggs. The nurses told me no make up, but those that know me well knew I wouldn't dare walk out without mascara!
They take me to a room with my mom and I change into the hospital gown. They let me keep on my neon green and hot pink cheetah socks. I knew I still had to be fashionable, even in surgery. ;)
They wheel me to a room and a doctor and nurse come in to inject me with the blue dye that week flow from the tumor site to my lymph nodes. It's two injections, with a strong sharp burning sensation just underneath the skin for about twenty seconds each. They close up my gown and send me to the surgery waiting room. My mom, dad, brother, grandma and grandpa all sit in the room with me for an hour, while this blue dye is working it's way through my lymphatic system. Fifteen minutes before my surgery time, the anesthesiologist comes in to start my iv. One dose of versed and I was out. I remember my family saying goodbye when they wheeled me out. I remember the operatory they wheeled me in to, and the faces of the two nurses. I remember them putting my cover over my hair, and thats the last I remember.
Next thing I remember vaguely is waking up in recovery for a brief moment. Then I remember waking up in my room in the womens pavilion with my family there. I remember a lot of talking, but I thought I was dreaming. I was in and out of consciousness while conversing, but apparently I made a few jokes that were pretty funny. Glad to hear I'm funny even when I'm sleeping. ;)
I will never forget the feeling the next time I woke up. I opened my eyes and thought I had been dreaming. I felt like I was laying in the middle of the road and a car had just run over me, leaving me paralyzed. It felt as though every rib was shattered, every muscle torn and all my skin was burned. My chest felt crushed and I could barely breathe. Then I remembered what happened to me. I moaned for pain medication and help moving. My family reassured me everything was okay, as I allowed myself to once again, fall asleep.
Through out the night, I woke up every hour in extreme pain. The nurses asked what my pain was on a scale of one to ten, I always yelped a ten. They doubled my dose of morphine and yet my pain felt exactly the same each time I woke up, as if my chest as had been crushed by a vice. All night long nurses came in every hour.
Between vitals, medicine every hour, extreme itching from the pain meds, they needed me to get up and pee. It was 3 am, and I hadn't gotten out of bed yet. Two nurses came in and used the mattress pad behind my back to scoop me in like a burrito. I couldn't lift my arms up, so they rolled me to my side and helped me sit upward. My whole body felt like a thousand burning needles, as I tried to sit and gain my consciousness. The room was spinning and my body felt as heavy as metal. They picked me up and had me stand so I wouldn't fall.
We took mini steps to the toilet. I attempted to reach down and pull down my panties, but my hands could barely move. The nurses each took a side and helped pull them down. I got myself to sit and cried in sick at how bad each muscle felt on the way down. I didn't have any feeling of needing to go, and I tried to push and pee. It trickled out and it took me almost ten minutes to pee because I had no control over my muscles! The ladies helped me wipe, pull up my underwear, and walked me to the sink to wash my hands. I was a toddler all over again, unable to function like an adult.
Then since I was up, they weighed me. I had gained ten POUNDS of fluid from surgery. I looked down sand my body looked so distorted. My head was pounding and my chest burning, I begged to get back in bed. They assisted me into bed, every moment excruciating. I felt like every little tendon and muscle was tearing with every movement.
Back to sleep I went, being women up each hour for blood pressure, oxygen saturation levels, temperature, pain medicine, anti histamine, and antibiotics. I had to breathe in a tube every hour to help prevent pneumonia as well as force myself to cough. My great friend Shelly was working art the hospital as a nurse in labor and delivery. She made a stop to my room and I talked her ears off about how everything felt and how I could have never anticipated this kind of pain in my entire life. She told me I looked great (liar) and made me laugh for the next thirty minutes. It was the first visit I remember clearly, and I felt so special and loved. She told me I better take it easy, and continued through the night with her shift.
The next day my family visited once again. Shelly also visited right after her shift in the morning. Then my plastic surgeon came and asked how I had been feeling. He checked the surgery sites and said they looked great, but even him moving the tape was the worst pain I've ever felt. He asked if I had gotten up out of bed, and I told him only to pee. He urged me to get up and walk, to take the gravity off of my chest and get movement and blood flowing.
The nurse came in and helped me sit up. I then stood and had to catch my balance. We then took mini steps into the hallway, and she had to keep reminding me to breathe and look straight. Looking up, down, or side to side made me dizzy. After a minute or two, I requested to go back in the room. Even in all of that pain, I knew I needed to sit up and let my blood flow. I ordered lunch and ate it at the chair in the company of my family.
Then ten minutes later I requested the nurse again. I told her I wanted to walk more. She held my hand in hers and dragged my iv next to us.we walked to the end of the hall and back, and I had started to feel more like myself again. We came to the room and sat again, chatting with everyone there. Thirty minutes later, I wanted to take another walk. My friends, boss and ain't had stopped by and I knew I needed to keep pushing through the pain.
Natalie, jenny, michelle, katie and I all took a walk around the entire floor. They took turns pushing my iv cart for me and we joked about how much cuter we were than the sex and the city girls...but the hospital version. They mentioned how fabulous I looked and how great I was doing. We even had a mini pow wow girl session. Katie, Amy, Natalie and I talked boobs, make up, weddings and gossip. I felt like the luckiest girl in the world.
I received flowers in bright pinks, a tummy cookie bouquet, cards and zebra striped gift bags. I got pink glitter slippers, zebra striped slippers, make up and magazines. There was food and chocolate, and breast cancer awareness gifts. I felt incredibly loved and supported, and I knew I was on the road to a positive recovery.
My breast surgeon came in to talk to me. She looked at my breasts and said surgery went well. I'd follow up with her in a week as well as with my plastic surgeon. They were worried about the left nipple and if it would survive the surgery, being that the tumor was near it. The incision extended underneath it, and each time they checked they saw blood flow to the area. Things were looking up.
The following day was discharge. The medicine had been switched to percocet tablets, and my pain level was managing to stay at a five. Two tubes on each side under my arms, were drains that collected fluid and blood from the incision sites. These had to be emptied and measured twice a day. I had to demonstrate squeezing the long tubes to drain the blood, opening the bulb which resembled a grenade, and pouring it into a measuring cup. Gross.
The nurse came in and helped me wash up. I sat in a chair as she washed my hair in the sink. Unable to lift my arms took away a lot of my basic functioning. I leaned my head down as she washed my hair and towel dried it. Then she grabbed a washcloth and washed me down. Showers are not allowed for two weeks. Back to being a toddler again. Help getting stressed, help brushing my hair. Even (gulp) help with my make up! Both surgeons came to check me once more as I got ready to go see my son that had just undergone palate surgery.
The wheelchair assisted me down to the car as my dad helped me get in. Evey crack in the road, every sharp turn was like a dagger to my chest. I held my breath looking at the road before me and all the turmoil my body would feel as we drove over the beaten up roads.
We arrived at Childrens Hospital, and my dad got a wheelchair to bring me up. We get to a Colton's room and the second I come in, his eyes light up. Hes laying on his bed, connected to his iv and he tries to to it out and run to me. I sit in the wheelchair and wait for him to calm down but get up as fast as I can to sure by his side. He reaches his arms up for a hug and says, "Momma!" I can't hug back, so I put my arm around him and climb into bed. Me and my lil boy, healing together. I was so incredibly proud. I stay in bed with him and tickle his skin, as he lays and plays with his leap pad. Spit is collecting in his mouth and he won't swallow because the back of his mouth hurts too bad. The nurse gives him some pain reliever in his iv and states he can go home when he can eat liquids by himself. Even drinking water was out of the question for him at this point.
Colton says he wants to take a walk and we get up to see the play room. I notice my arms are swelling with red bumps, and my face felt like it had a ton of fluid all over. I realized as I looked all over, I was covered with extra fluid and an extreme itching and burning sensation. My dad goes running to the pharmacy to see if it's open, as I'm scratching my face, my puffy eyes, my swollen stomach and my red hot arms. He comes back to say it's closed and goes to walgreens. He returns, I am saved and we go home! Now time for home.

Saturday, January 12, 2013

Overwhelming

The past week has been incredibly overwhelming for me. I spent more time in appointments and testing than I did on working and time with my kids. I took each appointment in stride and prepared myself for the next. It feels like you have to put on your armour before you go, so that you can face what they have to tell you. I take in all the information and pretend this seems normal for my life, but inside I can still remember when my problems were just boys, hair and nails.

I had an MRI of both breasts which showed that I still had suspicious areas all over the left, but none on the right. I has an IV placed in me, laid on the bed like superwoman for 45 minutes in a tiny little circular opening while they scanned me. The IV made my picture "contrast" which meant it helped to see the possibly cancerous cells.

I had another mammogram done on the opposite side which showed a small cyst, but completely normal.

I met with the plastic surgeon who showed me before and after pictures with my mom and Lilianna. He did measurements and explained what everything would entail. I would get expanders put in the day of the surgery after they remove all of the breast tissue on both sides. The expander looks like a really thick implant but with a small circe that sticks out a bit in the center. So when they place it under your skin, they can feel where they place the needle to fill it with saline over time, to stretch the skin and expand the breast. The stretching process takes up to two months max, and the expander is not replaced with implants until chemo is over with. When I looked at the pictures, I thought it would look a lot prettier than it did. But then I realized that these women were not getting augmentation. They didn't get to keep any of the tissue inside of their breast. Lots didn't get to keep their nipple and had scars over the center. In augmentation, you keep all of the inside and add some to make your breasts larger. In reconstruction, they take everything out and have to make it look fatty and normal again. So they can't just put an cirlce implant in and call it a day- it would be like two balloons under your skin. They have to take some of your own fat to inject and place around it and take collagen from a cadaver (with no living cells left) and have your cells integrate into it. I thought about the fact my breasts were the main source of nutrition for both my kids as infants and realized I'd not be able to breast feed ever again.

I met with the oncologist who was absolutely wonderful. I would come for chemo about 3 weeks after surgery at soonest, when my body is completed healing. Then I would get my first dose of chemo on a Thursday morning. It lasts for about 5 hours. There are 7 chairs seperated in their own divisions, equipped with built in heating and vibrations for massage. I'll have my own flat screen tv dropped down from the ceiling, wifi and laptops available upon request. I will get 4 doses, 3 weeks apart. The first week will be when I feel the sickest. I'll be nauseated, weak and tired. But they can give me meds for the sickness to try and help. The second week will be when I am most prone to infection. The chemo will literally kill any cells multiplying and dividing rapidly, so all of my white blood cells will be gone and I will have no immune system. The third week is when I should feel at my best. I will return to oncology at the end of the week and have my white blood cell numbers counted. If I am healthy enough, they will deliver chemo again and same steps apply. If I am not healthy enough, they will wait until I am before they deliver the next dose, which will stretch out my treatment.

Finally I get a call from the genetics department. They have my results. I tested positive for the genetic mutation called BRCA1. Initially, I assumed it was 2 because that is what my aunt thought she had. After the test and her release to have her records checked, they compared out results. I have the EXACT same genetic mutation in the exact same spot as my aunt. This means my mother passed this to me, and means that Lilianna has a 50% chance of having this gene as well. I have been through receiving genetic results before with Colton, so I wasn't upset or felt like I was a victim. I understand that knowing this information will be very helpful in my life ahead. It also means that at 28, I have to face the fact that I might develop ovarian cancer, will need my ovaries removed in the near future and will have a lot of testing to monitor me for the rest of my life. So instead of living ignorantly, peacefully, and pretending nothing else will happen to me because I've been through enough, I have to face that this is a possibility for my future and screen for it for a long time. Sometimes I just want to pretend, ya know? I just want to slip into my old childhood bedroom, put on my princess gown, play barbies and pretend there is no hurt or hardship in the world. But I know God wants me to face this now, to strengthen me for all that will come in my future.

Surgery is next Tuesday at West Allis Memorial Hospital. I arrive at 8:45 for testing and surgery starts at noon. I will have my sentinal node biopsy to see if any cancer spread to lymph nodes. Then I will be operated on for 7 hours in day surgery. Following, I will go to recovery for at least an hour to make sure I am doing alright. Then I will be transfered to the Women's Pavillion close to 9 at night and stay for about 2 days. I have to admit, I'm pretty excited my friend Shelly will be a nurse that night at the women's pavillion, so she can stop in and maybe say hi.

Thursday is Colton's palate surgery: a Double Furlow Z Plasty. This will correct his cleft palate so it closes completely and help aid in his speech development. He will stay in the hospital for about 5-6 days depending on how well he does, so momma and baby boy will be recovering together. I need at least 2 weeks off before I am even allowed to drive, so this next week shall be interesting. The good thing is that by the end of next week, Colton & I will end up being even better people than we were before. :)
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Sunday, January 6, 2013

Wig shopping

Yesterday I went wig shopping with my high school best friend that experienced cancer at 17 years old. I had asked her if she would go with me when she had asked me what she could do to help. Knowing that she had experienced shopping for one before, I felt comfort in knowing she would be the perfect person during such a vulnerable time

Katie had a pre-arranged list of places to visit and even called them on our way to find out if we could just walk in and try them on. There was one store we had heard about that was new and had recently been on the news advertising their business. When we walked in, we were a little nervous because we didn't know what to expect.

The entire store had heads all over with a HUGE selection of hair pieces. We were greeted immediately by a lady who came to unlock the door. She asked what we were looking for, and I laughed and said she was the very first person I had talked to about wigs, so I had no idea! She asked if I wanted synthetic or real, and I asked what the difference was. She said the real hair you could wash and style, use heat on like regular hair. Some of the synthetic pieces you could style, apply heat and wash as well. Basically I gathered the biggest difference was that the real hair pieces felt soft and were much more expensive. 

We started with a real hair piece. The brown hair was wavy, long and beautiful. It had light highlights and felt so incredibly soft, I had missed that feeling. It came with a high price, considering it cost 249.00...

Then I tried on a short curly one that was synthetic. It was only 39.99, and I started to get excited with all of the options I had and how inexpensive some of them were!
 Katie started to get into it too! We were loving seeing how different we looked with so many cuts and colors. She started to consider dying her hair brown. Each wig had netting that laid on the front of your forehead that they cut and fit specifically to your head before you leave. They also have a stretchy band on the inside to tighten and loosen it, as well as three combs to place in your remaining hair to help it stay.

 Next I tried on my very favorite. A real hair piece with long red hair and bangs. Sounds very eccentric doesn't it? But I fell in love with it. It was priced at $150 and I knew I didn't have the money up front. But I tried it on so I could see how I looked. 
 It was so light and soft, and my eyes looked strikingly blue with the red tones. I felt more like myself in this one than any others, and told the lady I'd have to come back for it. Then before we left, I saw a soft brown, slightly curled hair with highlights and had to try it on. The sales lady helped me put it on, and I absolutely loved my new self. This one was only priced at $89, was synthetic and she offered me a 15% discount because it had been on the floor for trying on. It was also the last one of its kind. She brushed it and I put it on with pride. 
 On a day that I thought would be incredibly sad, I ended up having one of the best days of my life. We smiled, we shed tears and we shared our sisterhood in a journey Katie understood. I felt comfort in knowing there was someone who truly knew what I was going through, and for once I didn't feel alone.