On September 23, 2010 my OB-GYN called me to confirm the answers I had been waiting for a solid week. This is the same doctor that delivered both my boys, and knew me like we were BFF’s. She said “Amanda, I made sure they let me be the one to call you with this news… good or bad. And I am so sorry but it is cancer. It’s growing rapidly and we need you in here now.”
I tried to say something but my voice just would not even make a squeak. Dr. Amsterdam says, “Are you still there? Say something please, Amanda.”
Finally I said, “I am so happy it was me. If someone had to wave a magic cancer wand over my house… I am forever grateful that it was me, and not my boys or my husband.” Right then, I knew I had to be strong for my family. I couldn’t cry or freak out or say what I really thought, because it would scare the hell out of them.
From then on it’s been quite a roller coaster of being a sick mother, keeping a smile on my face while my friends abandoned me, and just sheer loneliness. Everyone around me is afraid to touch me, afraid to say what they want to in front of me, and afraid of my fight.
The last 5 years of battling has not been easy, but I expect to beat this!
I was diagnosed in September of 2010 and spent the first 6 months in chemotherapy, which lasted until March of 2011. All the while dealing with a bully of my 5-year-old who was making fun of my son because of my diagnosis. I was dealing with an alcoholic mother who literally almost kidnapped my son. Had to call the police while I was at my first oncology appointment, good times. Dealing with 2 boys that needed breathing treatments 6 times a day. Can’t imagine why I was going to find out the tumor had grown another 2 cm and infecting over 20 lymph nodes, while I was in treatment. I was under a ton of stress! Just diagnosed with late stage cancer, and dealing with everything else life throws at you.
I had a double mastectomy, on the table for 10 hours as they tried to remove the tumor and its cancerous feelers going into my left arm. The feelers went down into my left elbow, so I lost muscle in my arm as well. Followed by 52 radiation therapy treatments from June 2011 to August 2011. Burned to a crisp, people would stop me and ask if I was in a car accident or house fire. I would also go through 6 surgeries to correct my chest wall that was ulcerating and wide open. This then threw me right into chemo induced menopause. As well as my third surgery to perform a radical hysterectomy, in order to stop the cancer from spreading into my female organs.
After the hysterectomy in October 2011, I was still going through surgeries to correct my left chest wall after radiation. Now, unable to walk due to pain in my right hip. I was using the furniture and walls to get around my home. That’s when I was told that the cancer had spread into my bones. Now it’s in my right hip-joint, right femur, all over my pelvic bone and several tumors on my spine. Really?? Why did I just go through all of this??!!? And now, more radiation? Sure! Why the hell not! They put me in a clinical trial so that I would be able to afford the treatments. While hitting that cluster of tumors in my hip, they would try to hit the huge tumor on my lower spine, in hopes of getting me walking again. And this caused the radiation to go through my stomach and lower intestines, which meant horrible vomiting after each treatment. I got through 14 treatments, lost 15 pounds and could not keep food down. But I could walk on my right leg. They discontinued the treatment because I was not doing well. The year continued by more surgeries to correct my left chest wall. And this is when I decided to go to M.D. Anderson for a better treatment and level of care. And I found it, they are absolutely amazing! I would never let any one of my family members mess with a local hospital for cancer care, ALWAYS go to a real deal cancer center.
They started me on life maintenance drugs; bone strengthening meds, vitamin dips and bone marrow inhibitors that produce white cells. I am also still going through chest surgeries for radiation at this point. And going to the hyperberic chamber to get it to heal. Plus, raising funds to make the trip to Houston every 3 months, raising a 2 year and a 7-year-old, working 3 businesses, speaking to newly diagnosed patients, and keeping a smile on my face. Thank you all so much for helping me with all that goes with traveling for treatment like childcare, watching the house, pets, funds, plane tickets, food, gift cards, gas cards, ect, it was all truly amazing! And it was exactly why I made it through year 3 – I knew people out there cared. I continued to speak at the walks and races and anywhere that wanted me to tell my story. Knowing I had helped someone who was facing this, made it easier to fight my own fight. And my images continued to show no new growth over the next year!! This is a huge deal after 3 years of never having good news, and now we stopped the growth?!! YES!! Now, I just have to actually beat it! Working on it.
Now the local hospital has decided that I am not paying them enough. I was paying each bill $25 per month which was $225 per month total. But they refused the payments and wanted $468 per month. We were already struggling with my prescriptions, and other expenses, we just didn’t have it. And they decided to take it anyway and garnish my husbands paycheck at the employer level so we never saw the money. Now my husband was lucky to get $50 out of each check. This meant we were quickly getting behind of mortgage payments, and everything else. I believe the financial stress caused the next few scans to show more growth, now it was in my right femur, right iliac, and a new watch spot on my liver. So I started eating foods for my liver over the next 3 months and it worked, there were fewer irregular cells in my liver! So I continued to work my businesses, and raise my boys and raise funds for the next trip. Thank goodness I had Walter to help me through all the side effects that go along with cancer. He made it possible for me to live my life without the extra disruption of pain and lymphadema. I had lymphadema in my left arm from losing the lymphnodes in surgery. And I had lymphadema in my right hip from radiation. He helped tremendously!
My 12th surgery due to cancer was so excruciatingly painful, I actually went through a real meltdown. My scans showed necrotic tissue in my left chest wall caused by the radiation that never actually healed on the inside. This dead tissue was too close to the lungs and heart, therefore they needed to cut out the dead tissue and bring living tissue to the area. The surgeon told me she would also be able to do a lymphnode replacement since they were already taking skin graphs from my stomach. This would eliminate the lymphadema in my arm! I was so excited. I still had a breast implant on my right chest, which was painful and I was bruising so I asked her if it would be possible to remove it while she was working on the left side. She then asked “if I could find enough tissue, could we try to build a breast?” I said sure, and never thought about it again. Trying not to get my hopes up.
I woke up after being on the table for 12 hours, in horrible pain. They had not hooked me up to the pain meds yet and I was feeling EVERYTHING! I had been sliced from hip to hip and neck to stern. I started crying with the nurse who yelled in my face calling me a cry baby, and telling the while floor “we’ve got a crier!” They brought me into ICU and literally dropped me on the bed because I was unable to scoot myself up in the bed. They finally gave me a morphine drip and I went to sleep. Two hours later a doctor came in talking so loudly at 5am, I could not believe it. This is the ICU at 5am, shut up! The entire stay at that hospital was brutal. I was there for 7 days, and I cried all day everyday.
I did however wake up with new breasts. The surgeon was able to do it, and I have not had any problems with lymphadema in my left arm since! Now I don’t need to wear prosthesis anymore, and I will wear a surgery bra. But I am still having some issues at the graft site. Nerve pain at all sites. Still so happy they were able to do such a surgery at all, and that I lived through it! After 8 weeks of a very long and hard recovery, I was scheduled to the my oncologist in Houston.
Scans showed new growth on my skull and spine. So they changed the treatment plan and I am on Ibrance which is a chemo pill. It has caused bone pain, neutropenia, alopecia, anemia, upper respiratory infection, and low blood platelets. Plus, we are about to lose our home at this point. Just a really tough time for us, and we had to make a very hard decision to leave our home and our friends in Kansas City. So we moved closer to family and closer treatment, and we really like it, but missing our friends.
Living with a chronic disease, it can be scary and it’s not fair to your loved ones. The one thing I can’t stand the most about cancer is how hard it is on everyone else. There is no one to yell at, no one to blame. And nothing they can do. But I have never let it take over my life, although it tries to all the time.
Here’s to my 6th year of fighting! So happy I am here to tell my story today. Thank you for your support.