Rachael's Story

                 Everyone worries that they may hear those dreaded words, “It’s cancer.”  I doubt many of us every truly believe that we will hear them and I know that there are very few people that truly think they will hear those words before they are at least 60. Sadly, all too often when we do hear those words, it comes at a very unexpected time and we are rarely over 60 the first time we hear it.

                In 2006 I was in Japan visiting the man that would soon become my husband. I had been there for several months when I started experiencing back pain. The pain was not horrific so I figured ice and heat would do the trick. Sometimes this helped, but over the period of several months the pain just grew worse. I began to see a chiropractor and that would help for brief periods of time, but then the pain would return. That spring I flew back to the United States for my Father’s retirement ceremony. While there I slipped down the stairs. I hit my bottom three time on the steps. When I got back to Japan and told my chiropractor, he insisted that I had x-rays done before he did any adjustment. He did not want to risk things if I had a compression fracture. I took the 45 minute drive to the nearest English speaking hospital and the x-ray showed what appeared to be a small fracture. I was given Motrin and bed rest. Unfortunately this did not help. I got out of bed 2 weeks later and collapsed. My soon to be husband assisted me to the car and we went back to the hospital. I didn’t know it yet, but that was going to be the first day of a several year battle for my life.

                I had MRI and the result was that it was a tumor on my T6 vertebrate.  A biopsy confirmed that it was a Giant Cell Tumor. I had my first of what would be many surgeries. In comparison to the rest of my surgeries, this one was fairly easy. One incision and a chest tube scar. They removed the majority of the tumor but I was going to need to follow up when I returned back to the states. I went back and assisted my parents with a cross country move since my Father had just received a job in the Midwest. In return, I would stay with my family until I received a call telling me that we had a house in AZ.

            After arriving in Iowa I made an appointment with the neurosurgeon at the VA hospital in Omaha to follow up on my condition. After looking at my scans, the doctor decided to take my case before the tumor board.  A few weeks later my significant other called to let me know we had a home in AZ. Since I had not heard back from the doctor yet and I was ready to get out of the subzero temperatures, I packed up my car and booked a hotel at the halfway point of the trip. As soon as I got the last box in my car the phone rang. It was the surgeon, I needed surgery and I needed it within the next week. So much for sunny weather!

            I had my second surgery and everything went well. I was not released from the hospital until I agreed to wear a full upper body brace. I was not happy about that, but I eventually caved as the ICU, as nice as the one in Omaha was, is not the Ritz. So I agreed to wear the brace and left the hospital after about a week. I was not allowed to drive nor was I cleared to travel. My significant other flew in for Christmas and drove my car to Arizona. The doctor finally approved my travelling to AZ in February under the condition I made a follow up appointment with the VA hospital as soon as I arrived.

                After moving to Tucson things really started to go well. I went back to work, we got a dog, got married, and we bought our first house. But then just a few short months after our wedding I began to develop a bad cough. About three weeks after moving into our new home I went in for my routine scan. About an hour later I received a call asking me to come back. That is never good.

                I was told that the tumor was back and it was incredibly large. So large in fact that it was crushing my airway. That is what was causing my cough. I had a biopsy done to confirm that it was GCT again and once the results came back I was scheduled for surgery at the soonest available time. It was only about two weeks later, February 19^th. I went in that morning expecting to wake up in pain, but have a relatively simple recovery. I was wrong. I woke up and I knew something was wrong. I knew my surgery didn’t take that long. I’m not sure how I knew, but I did. I was told that the tumor was too large to safely be removed. Once I had healed I would be sent to radiation oncology.

                Radiation was horrible. And after two months of being tired and sick nothing had changed. I was then sent to medical oncology. I was told that there were a few treatments that they could use that might keep the tumor from growing, but that’s the best they could hope for. I was given a second opinion at the Mayo Clinic, but I was given little hope from them as well. I then was then given a consult for pulmonology so I could get a stint placed in my lung since I was now on supplemental oxygen and my breathing was only getting worse.

                Then I got a phone call from my pharmacist. They had been given permission to use an experimental drug that had been showing promising results in the drug trials. They asked if I was interested, of course I said yes. Within 3 weeks I noticed an improvement in my breathing. I asked for a scan to make sure it wasn’t just a placebo effect. It was not. The tumor had actually begun to shrink. It took about two years before it was small enough to be removed. Unfortunately the tumor had spread to my lungs so I also lost the lower right lobe of my lung.

                This is where my fight should have ended. However it is not. There were complications from the surgery and two days later I was not getting oxygen to my brain. I was put into a chemically induced coma and intubated. After three days the doctors decided that I needed to be woken up, but the only way to do that was by performing a tracheotomy so I could still breathe. I was in the hospital for at least a month, maybe longer. When I was finally released, I spent one week at home before I was forced to head back to the ER. As it turns out I had hospital acquired pneumonia. I was lucky; I managed to get thru that as well and make it home in time for Thanksgiving that year.

                I had one more surgery the following year.  My lung had begun healing and was stretching to try and fill the empty space. Instead of going straight down, it ended up extending diagonally and rubbing against the metal rod that was holding my spine together. This was another month in the hospital. It took the doctors a while to figure out how they would be able to fix this. None of them had ever seen anything like this before. I lost a bit more of my lung and they had to use some material from my stomach area to hold my lungs in place.

                Throughout these past few years I have fought and struggled on a daily basis and some days I still do.  There were several times when it was not clear if I was going to pull through. But I decided that I was not going to let this thing win. With the support of the most amazing family and friends anyone could ever ask for, I came out of this a much stronger person, and even managed to go back and finish my college degree despite the many hospital stays. I still worry that someday the tumor will come back. When I get a cough that lasts longer than a few days I still worry that something has happened to my lung. I will never get a guarantee that the tumors won’t come back, but today I am able to live my life. I may have a few limitations but I am still here and I want to make sure that other people in my situation get that same chance. I hope that there will come a time that no one will ever have to know what it feels like to hear the words, “You have cancer”.