My sister in law came over today and took some very raw and truth telling photos of where I am in my treatment. I want to share them with all of you, and the world. I’m going to take a few days to absorb the emotions and feelings that overcome me while I take these photos in. I’ll update my blog with my usual long ramblings then. Please know how much courage it took for me to be so vulnerable and honest to share with all of you what true pain and beauty are behind my fight.
As you know, for some reason my right expander, which was the non-radiated side ended up getting infected. I had surgery September 30th to have the expander removed, infection cleaned out, and a new expander replaced. October 5th I woke up with fluid leaking and obvious signs of infection. So, October 5th I had surgery to completely remove the right expander and allow healing for a few months before replacing another expander. The next few following weeks, my right expander began to be extremely painful and start showing signs of infection. I was going regularly to my surgeon to be followed and do everything we could to prevent infection and save the expander. There were several reasons we decided the expander reconstruction plan. First of all, I am a 29 year old young woman. I was very terrified as this was all happening so fast to have “nothing” on my chest but scars. I thought if I could have expanders I would at least to the outside world look like any other woman. Secondly, we were trying to avoid a huge 15hr reconstructive surgery. So, we gave it out best shot. I pushed through pain each day, the best I could, with a smile on my face for months. The few weeks following the removal of my right expander I could feel the infection developing in my left expander. Well, that’s not necessarily true. I could feel that something wasn’t right. My surgeon was doing anything and everything he could think of to save my left expander, and I will forever be thankful to him for that. One evening after leaving his office I cried the whole way home because I know what I had to do. I knew at that exact moment that I was done. Done being in so much pain I couldn’t live my life, missing playing with my boys, playing with my husband, chasing the boys, and the simplest of things like cooking dinner, sleeping, being able to sit up on my own. laundry, unloading the dishwasher, big hugs from tiny boys, etc. You get the point. The pain was running my life. I could barely breath without being in tears, much less yawn, or sneeze. So. that night I decided I would be calling my nurse and telling her I want the left expander out, I cannot possibly continue each day in so much pain, and I wanted my life back as much as possible. We scheduled to have the expander removed Tuesday October 25th. In the meantime, the pain kept increasing, and what appeared to be infection keep spreading. I sent pictures of the infection site to my surgeon and he admitted me to the hospital Monday to receive IV antibiotics all day/night leading up to surgery Tuesday. I was in so much pain they kept feeding me full of pain meds. I don’t handle pain meds well. At this time, I am in so much pain and I’m also very sick to my stomach. Much of the day including in pre up prior to going to surgery, and also following surgery, I threw up lots of bile. Which if you weren’t aware, you use a lot of chest muscles when you throw up. This does NOT feel good. I slept the entire night following surgery (minus being woke up for vitals constantly) which was a great sign. I haven’t had more than 2-3 hours of sleep for about 2 months from the pain. When I woke up this morning, I realized I felt better than I had in 10 months. I was so sick and in pain from both neo-adjuvant chemo, my bi lateral mastectomy, and radiation. Then, the extreme pain from the expanders. As of today, I feel ‘good’. I can answer when someone asks me how I am and answer “I feel good”! Now, of course my ‘good’ is much different from all of your feeling ‘good’, but I’m thankful for what I’ve got. When I had made the decision to have the left expander removed it was a very emotional decision. Even though I had pushed through so much pain and hell, I felt like this meant I was giving up. I also was very disappointed in myself for going back wards after pushing so hard to make the progress I had. Maybe the hardest part was being scared of having no breasts, but being covered in scars. It sounds so ridiculous I know. But being 29 years old I want breasts, I want to feel sexy. I’ve been learning just what ‘sexy’ really is, and I’ll tell you, breasts or scars women are sexy. I gave absolutely everything I had to the entire expander process. But I knew when I woke up in my hospital bed this morning, in the least amount of pain I’ve felt in 10 months that we more than made the right decision. I’m just as beautiful covered in scars, and I get to slowly get my life back!!! Next week I will go in and have my drain and stitches removed and continue to heal. We’re hopeful for smooth sailing from now on! I’m learning the embrace the new and true beauty that is now my body. Depending on how well I heal, we will have the big reconstructive surgery I tried to avoid in about 8-12 months. Although, my husband says I’m gorgeous and beautiful the way I am and that means the world to me. I’m still a 29 yr old young woman that wants breasts. So, when the time is right we will make it through the surgery just as we have everything else that has come our way. For now, I’m going to heal, embrace my beauty, enjoy regaining my life, completing the remainder of my treatment to ensure a long life of love with my incredible husband and boys, and enjoying our new home and slice of heaven.
We’ve hit a lot of bumps throughout my treatment. As they come, we take a deep breath, hold hands, I look into my husbands eyes, and he kisses me a kiss that eases my heart and soul. As you aware, Friday September 30th my plastic surgeon removed my right expander, cleaned out all of the infection, and repaired all of the damaged muscle and skin. I had a difficult time in recovery with pain and nausea so they admitted me for the night. The nurses were wonderful and so kind. There isn’t a pain med that helps like my husbands kiss, my hand in his, looking into his eyes, his uplifting words and encouragement, or simply waking up in so much pain I can barely breath and seeing him asleep right next to me with his hand in mine. After discharge we came home and I followed all of my restrictions. 5 days following surgery we woke up to get ready for my post op. When I stood up there was blood and fluid leaking from my incision down my stomach. All of the stitches were still in place, so we weren’t sure what was going on. We covered my incision with gauze and headed to see my surgeon. When we arrived the gauze was complexly soaked and soaking through my shirt. He said it looked like a collection of fluid and infection between the muscle and the skin. He was able to squeeze out a lot of the fluid, but felt the safest and best thing for us to do was to remove the expander completely. He scheduled us for 4:30 pm that afternoon.We will let my chest where the expander heal for a few months than have another surgery come January or February to place another expander. As I sat in the exam chair while he tried to remove as much fluid as he could I couldn’t help but start to cry. Dr. Kiehn started to talk to me about how important it is to talk to someone through this process. That my diagnosis, and treatment plan would be incredibly hard for anyone but especially at my age. He talked about the fact that I will go through all of the stages of grief. That I have to, or I will never be okay. He stepped out to set up with the OR and anesthesia for surgery that night. I just looked at my husband and cried. Why is this happening? I followed all of my restrictions. I take all of my meds a hundred times a day. Why is this happening again? I cried because surgery is painful. I have horrible veins and getting IV’s is extremely painful. I don’t recover well from anesthesia. I don’t want to lose my expander, because I don’t want to go backwards. I don’t want to tell my new job that I have to have another surgery just less than 5 days after my last surgery. Do you have any idea how hard it is to balance Cancer and life? Let me tell you this has been a source of many tears for me. I have no control over any part of this. I have to roll with the punches as they come. Often times, I get knocked out cold and have to pick myself back up and look ahead. I can only believe that work, friendships, hobbies, and all that if my life will stand strong with me, and know that I am giving all I have each and every day. The reason I fight each day is to watch the two most incredible boys grow up and have families of their own, and to love my husband with all of my heart for the rest of our lives. As painful and hard as most days have been lately, we will get through this. I may not be the 28 yr old young woman I was when I was diagnosed, but I’ll be an even better version of that same woman. I’ll be covered in scars, my body will never be the same, I’ll have tougher skin than I ever thought possible, I’ll have a greater appreciation for all parts of my life, courage and bravery I never knew I had, and a heart that loves with everything it’s got. Days like today, I struggle waiting for what’s to come. I need to fall into all 3 of my boys arms and let my faith be bigger than my fear.
I know it’s been a long time since I’ve been on here to update everyone. My day to day life has taken every once of my strength and will to just get through the basics of each day. A month ago we took the boys for a camping trip, one of our families very favorite things to do. The day we arrived and began to set up, without thinking I grabbed a side of our cooler to help my husband move it. Big mistake. Not only could I not even lift it in the slightest I hurt something really bad in my right expander. I know I know you’re thinking why would you even think of attempting to pick that up? The thing is, I didn’t. It was a no thought to it motion of normalcy that I’m just not ready for. my body made that very clear. The plan for our camping trip was for me to take it easy, relax, read, and watch the boys play. That’s exactly what I did the rest of the trip. I continued to be in a lot of pain as I relaxed, and once we went to bed the pain was unbearable. I woke up in tears several times in the night unable to breathe. I knew something was very wrong, but didn’t know what to do. The next day I did nothing but rest and relax and the pain continued. That night the pain intensified and I continued to cry and struggle to breath from the pain. We left camping and my husband took my to St. Joes ER to see what was going on. We thought maybe I ripped my expander out of place. Here’s the thing, I have been through an enormous amount of pain in this past year, and non of it compared to the pain I was in from this expander. The ER drugged me heavily with pain meds, did a check X-ray to confirm the expander was in place, and an ultrasound to confirm the same. As we waited for results and I laid in bed in tears they continued to push more and more pain meds. The decision was made that the expanders were in the correct place, and that maybe I just pulled a muscle. I was discharged and sent home with pain medicine. I was so frustrated because I have a very high tolerance for pain, and I know my body well. Something was wrong and no one would listen to me. I spoke with the nurse at my plastic surgeon and she said it could just be a pulled muscle so I should be taking Tylenol, ibuprofen, and a muscle relaxer every 6 hours until I seem to be better. A few days later, I went in and saw my surgeon. He said everything looked fine, that it may just take sometime for my body to heal from trying to lift the cooler. We then expanded more that day. In the hour it took me to get from his office home I was in the worst pain of my life. I could barely breath or move, and was crying so much my husband couldn’t understand what I was saying. I called the next morning and explained I couldn’t function in this pain. I went in and the NP took 50 cc of fluid out of each expander to try to give me some relief. It helped slightly but not much. I was again told to just give it time, and continue taking all of the medications every 6 hours. For weeks I had been taking tons of medication as requested, my husband helped me get dressed and undressed, he helped me shave my legs in the shower, he moved all of my things such as my tooth-brush and paste on top of the counter because I can’t bend down, every morning he would wrap my meds for the day up in aluminum foil packets with the time I needed to take them, he would pack me a snack, and have my breakfast ready. It didn’t stop there, he would drive me to work, and take me to lunch each day, wipe my tears when I was so exhausted from the pain I felt like I wanted to just give up, he would remind me how strong I am and what a fighter I am. Remind me that this is all temporary, even though each day of constant pain felt like an eternity. I had a major melt down one morning for several reasons, the most sleep I’ve had in the past month was 3 hours from all of the pain. When I did sleep I apparently cried while I was sleeping. Each morning I would slowly open my eyes and ne praying that I wouldn’t be in pain. It never happened. So then I would take a deep breath and cry for a brief moment knowing that day would be another day of un relenting pain. Wipe my tears, and get ready for the day. As I would get ready, every movement I made was so painful, looking in the mirror I hate my body from all of the weight I’ve gained from chemo, my inability to be as active as I was prior, I hate my short hair, and I hate the way my expanders look. On my way to work that day I called the nurse with plastics and cried my eyes out. She explained that the crease on my left expander and the bubble on the right would not be that way when my implants are placed next August. She also explained that I must have my expanders for much longer than most patients. I have to have mine for 16 months. She said she’s had many patients who have had them for only 3 months and had to take ibuprofen, Tylenol, and a muscle relaxer every 6 hours for the entire 3 months. I do not want to do this. I don’t want to be in this pain for another year. She assured my everything was normal, and that it’s just going to take time to heal. Thursday I woke up and from the bubble on my expander I was told was normal I was leaking a yellow fluid that had soaked my shirt and sheets. I immediately knew something wasn’t right. I got in my car and started driving to my plastic surgeon. I called while driving when they opened and told them I was on my way and what was going on. The nurse and nurse practitioner were not sure what was going on. They took pictures and sent them to my surgeon who was on a mastectomy case. He told them he wanted to see me that afternoon after his surgery. They covered me with gauze and I went to work until it was time to go back. In the short time I was at work I had completely soaked through the gauze and it was leaking through my dress. Dr. Kiehn examined me and said it looked like a ripped my muscle pretty bad lifting the cooler and now the fluid from the tear was pushing its way out of my skin. He wanted to do surgery immediately to ensure my safety and prevent me losing my expander completely. He scheduled me for the next day. As I was headed home I was scared and nervous for another surgery but so relieved to have answers and possibly have some relief coming my way. The surgery want well, Dr. Kiehn said the muscle damage was really bad, and that there was infection. He cleaned everything out, removed the expander, and placed a new one. He also removed the damaged skin and repaired both the skin and muscle with donated tissue. My husband and I received a long discussion about how admirable it is for Dr. Kiehn to watch me push through everything that has been thrown at me, but that I am not super woman. He wants me to slow down, rest more, limit my activity, and work less. This is a subject I’ve had many tears over. I don’t think anyone has the slightest idea how hard it is to balance life with cancer. It’s next to impossible, and I do the very best I can each day. Sometimes it’s hard to remember that all of this is temporary. One day we will look back at all of this and smile because we did it! I completed radiation August 15th, and started a new job the 24th. My skin was pretty damaged and is taking quiet sometime to heal. I continue to feel the effects from the radiation through out my body. But each day the skin damage improves. I also began taking Tamoxifen. I’ll be taking this everyday for the next 10 years. It’s pretty hard on your body, body aches, bone and joint pain, hot flashes, nausea, and headaches, But we are hopeful my body will begin to adjust to the medicine and some of the side effects will minimize. All of it is worth it knowing the studies show how well the Tamoxifen reduces reoccurrence. I’ll tell you, I would do anything my oncologist told me to never have to do this again. My hysterectomy is scheduled for November 29th which is out next big step. I have a lot of emotion around this but I know it’s the best for my health and prevention of cancer coming back. As we keep checking things off of our list, it doesn’t get easier. Each step is a new kind of hard. But we’re doing it all and we will get through everything that comes out way! Below are pictures of the damage from radiation, as well as pictures from the surgery I just had Friday.