The story of Melissa
In February 2012 I went in for a chest x-ray for a cold and I was asked if I had been in any accident or had any recent injuries to which my reply was no? I was called later that afternoon to only learn there was a mass on my lung that had broken my ribs, that night I was petrified and constantly trying to figure out what I did to deserve this at 32 years old. I went in for a biopsy and had to wait for what seemed like forever for the results, within a couple weeks I had a appointment with a Thoracic Surgeon and a surgery scheduled. It was planned to remove six ribs on the right side and replace them with four titanium ribs. They were convinced this mass was growing off the lung. The surgery was scheduled for May 2012. The surgery took almost 13 hours, while in the operating room the surgeon found it was not growing off the lung but the spine. We now had the results this mass that had been evading my space was a Desmoid Tumor in my chest wall (A rare location). I went home from the hospital about a week and half later with my husband and my life started to return to normal. I was working full time and for my family (my husband, & 2 sons (6 & 9). In May of 2013 I was having extreme pain again and went to the emergency room after four hours of sitting there it was determined that 2 of the titanium ribs were broken and I was sent home with pain pills. I continued to work and take care of my family even in pain. In September of 2013 I was in so much pain that I again went to the emergency room, this time I was admitted into the hospital as the final titanium rib was broken. After a week I was sent home to my family with words of sorrow to me but advice from the Dr.’s to be safe not let my children hug me and not to fall or move swiftly as the titanium could possibly shift and puncture the lung and I would die. I was told I wouldn’t live through another surgery and to go home and enjoy the life I had left and to take more pain pills. I decided to get a second opinion in NYC at Sloan Kettering I found another group of surgeons willing to try to help. I had a surgery with them scheduled for January 2014. During the pre-op testing it was found that a tumor had grown. I had another exam done and during the the physician stated that less than 2% of desmoids are blood fed, well as you may have guessed I am in that 2%, they need to cut off the blood supply to that tumor as to not interrupt any important veins or arteries during the surgery. The next day was my surgery this would be the second time I said goodbye to my boys only to not know if I would ever hold or talk to them again. The surgery was 18 hours they removed the broken titanium and put in a plastic shield to protect my organs, they also needed to stabilize the spine as the spine had fallen over due to the broken titanium. I am still recovering to this day I am in constant pain, I can’t sit or stand for very long, I will not be able to life over five pounds. I have trouble being in a car for more than five to ten minutes and living in rural northern NY (north of Syracuse) nothing is that close. I currently take three different pain pills that make me tired and sick. I am now down to 105 pounds and can fit in some of my young children’s clothes, I have trouble keeping food down due to all the medications. I have been battling Disability for a year and half now and I still can’t seem to win. My kids have grown up so much as they have had to help me so much. My husband currently works full time and we struggle constantly. I go every six months for a new scan awaiting nerve wracking news as to whether or not the tumor has grown. If the Desmoid grows it has been determined it will grow to the left, when and if it does it will strangle the heart and kill me. I am 34 years old and I have two young boys (6 & 9) and I was diagnosed in 2012 at the age of 32 with Desmoid Tumors I have been through hell and back and everyday it is a constant battle that I fight for my kids and husband. I always wonder what I did and who I did it too, to deserve this ( I never smoked, drank (much), I have always tried to treat others as I would want to be treated and have worked hard. I have had a hard time with my Desmoids as not many people have heard of them or worked with them which has caused many guesses and speculations. I have to put my hope and trust in the physicians that they will have enough knowledge about the Desmoids that I am able to spend more time with my children. I am being tested by someone and I am fighting only hoping to come out the winner if not I will know I fought a good fight. I have learned many important lessons along the way that I try to live my life by now and I plan to raise my boys with as well. I am constantly concerned that I am not living up to my role as a wife, mother and friend; I take pain pills every couple hours as prescribed just to dull the pain to a somewhat tolerable level and this only lasts about 30 mins and then you wait another 4-5 hours until you have those 30 mins if relief again.