By Donna Luce-MacDonald
You won the lottery! I love you! You are a great firefighter! You are the next contestant on “The Price Is Right”! These are all phrases that you love and want to hear. One phrase that you hope never to hear in your life is: You have cancer. Unfortunately, one in three firefighters will hear that phrase and will be sent into a new world of fear, anxiety, and the unknown.
Diagnosis
I was sent into that world 11 years ago when I was diagnosed with chondrosarcoma, a rare bone cancer, in my sternum, which is a unique location for cancer. It came as a complete shock because I was 32, healthy, and in the best shape of my life. I was training for the Firefighter Combat Challenge and worked on the busiest engine company (Engine 3) in Providence (RI), both of which I used as an excuse as why I was feeling the way I was. I was losing weight that I couldn’t afford to lose, and I was so tired I felt like I was walking through water. This was very unlike me, because I always had energy to spare. I assumed I was overtraining and not getting enough sleep from the busy nights at work. I took my next days off and rested, with good results. My first day back to work, I went on an emergency medical services run and assisted in lifting the stretcher of a cardiac patient when my sternum fractured. I was sent to the hospital for X-rays and was sent home with pain meds and a follow-up appointment with an orthopedic doctor.
I went for the follow-up and was told I needed a CAT scan because it was an odd injury for my age and I wasn’t struck in the chest. A few days later, I returned for the results and was told I would be seeing a different doctor in the same office. I was immediately called into the office and this new doctor placed my scans on the screen and pointed out a black circle and called it a sarcoma. I told him that he must have the wrong patient because I just had a work injury. He told me the tumor was the reason for the injury and that he was 90 percent sure it was cancer. I didn’t hear much after that; I was in shock and just wandered in a daze to tests, scans, and bloodwork.
I walked into the firehouse to turn in paperwork stating that I was going to be out of work for an indefinite amount of time, and it felt like a different world now. It was the usual – loud with jokes and laughter at someone’s expense, the tones going off and the loudspeaker announcing the next run – and I felt like I was outside looking in. Something must have showed on my face because when they saw me, everyone became quiet and asked what was wrong. It was the first time I spoke the words, “I have cancer,” the first time it hit me, and I lost it. There was a moment of awkward silence, then they all started asking questions at the same time. I am so lucky that I have a department of such giving, caring men and women who were there for me through the entire process! I will always be grateful for their support, help at my house, the wives who made me meals, and of course the jokes and laughter until it hurt!
Treatment
A biopsy confirmed what the doctor had predicted, and surgery was my only option; chemotherapy or radiation would not have been effective for my type of tumor. It was terrifying listening to the plan for surgery. My sternum would be removed, the pectoral muscles would be cut and resewn together, and I would have a prosthetic sternum made of GORE-TEX® plastic.
The day of surgery was unnerving. As firefighters, we are usually in control of the scene, fix problems, and move on with the day. I was now on the other side of that. I was the patient who had no control and very few options. Option 1: I could opt out of surgery, but then the tumor would grow, spread, and eventually I would die. Option 2: I have the seven-hour surgery, knowing they are going to open up my chest, not knowing what the outcome might be or if I would ever be able to work again or function as normal, have a prosthetic sternum, and experience extreme pain. Option 2 it was!
The surgery went as well as can be expected. There was extreme pain, I had lost even more weight so I looked like a skeleton, and I was very weak. My voice was even weak, because if I spoke too loudly my chest would vibrate and that sent a shot of pain through my still unstable chest. Laughing; crying; coughing; and, the worst, sneezing became things to avoid at all costs. Even hugging a pillow did not prevent the feeling that my chest was ripping open.
This lasted a few months, and slowly I started to heal and begin physical therapy. That was very discouraging, because how was I going to get back to work when I couldn’t bench press one-pound weights? Surprisingly, because I was in good shape prior, muscle memory took over and I improved each time. I pushed three times a week at therapy and more at home, and nine months after surgery I was able to return to full duty. I was so excited to return to work but apprehensive too. I had pushed people away because I didn’t want anyone to see me looking so weak and vulnerable, and I stubbornly thought that I could get through it on my own. It made it so much harder, and I was wrong. People want to help because they care about you and don’t care what you look like – they just want to be there.
Dealing with Pain
Life seemed to be getting back to normal, but my chest was definitely different. I was having trouble rolling my shoulders so my posture was rounded, and I still had pain in the center of my chest. I was able to work through the pain, and it didn’t affect lifting, but it was there. My doctor kept telling me that I did a very demanding job, my anatomy was different now, and I should consider retiring. That was not what I wanted to hear!
He was only one of the doctors on the team in Rhode Island who performed my surgery. My reconstructive plastic surgeon had taken a job in a Boston hospital, so I made an appointment with him. After tests and scans, he determined that I was rejecting the prosthetic, and it was trying to push its way out. The plan was to remove it and replace it with another prosthetic.
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| Firefighting isn’t just a job; it becomes who you are, your identity for so long, and when that is ripped away it is difficult to find who you are outside the job. (Photo by Ken LaBelle, NRI Fire Photos.) |
During surgery, it was decided that a new prosthetic was not a good idea because of what looked like an infection behind the old one. The muscles were pulled across and resewn again, and they closed me up. It was recommended that I not return to work because a portion of my heart was now exposed, but I felt great after surgery! The pain was gone; I could push my shoulders back; and, stubborn as I am, I pushed hard in physical therapy and returned to full duty six months after surgery. Physically I was doing great, but mentally I was falling apart. I couldn’t understand it at the time. I should have been thrilled; I was back to work, pain free, and life was where I wanted it, but I was very depressed. I was anxious at work, worried that my body would betray me and I wouldn’t be able to pull my weight when it counted. The relationship I was in fell apart. I was angry at myself for feeling like this, angry that it happened in the first place. I felt guilty for feeling anything but happy because I was going to survive and have the life I had before!
At work, I would smile and say I was feeling great, but as soon as I was home I couldn’t hold the tears in. My oncologist recommended that I speak to a counselor. I finally agreed, and it was the best thing I ever did. She gave me “permission” to feel any way I wanted. She explained that when you are going through it, you are caught up in the tests, scans, surgeries, and multiple doctor appointments so there is no time to process. Once everything slows down and you return to life, the emotion and fear hit you, and it can be overwhelming. Slowly, I started to heal mentally and return to a picture of the person I was before. I don’t think, after any traumatic ordeal, you ever return to who you were before. Something changes, and a piece of that black hole stays tucked in the back of your brain as a reminder.
More Surgeries
There were many ups and downs over the next six years. I had some minor health issues and scares that brought all the anxiety back, but they were false alarms. I settled in at work, continued to lift weights to keep my chest and surrounding muscles strong, felt my self-confidence slowly come back, and got married. Life was good again! Then, while carrying a large patient in a stair chair, she panicked and slid down the chair and her knees landed on my chest, injuring my collarbone and knocking the wind out of me. After another round of scans, it was determined that there was an unidentified mass at my collarbone and my chest was unstable from all the years of wearing a self-contained breathing apparatus and carrying hose and heavy equipment on my shoulders. It put too much pressure on my collarbones because I had a missing piece of my core.
I was going to need more surgery to remove the mass and I would also receive a new sternum. There were new products available now to avoid rejection. I have a new sternum made of MEDPOR® and titanium bolts, and the mass (benign, sigh of relief) was removed. Unfortunately, my pectoral muscles were cut for the third time and would not heal. I thought I would bounce back with therapy like the last two surgeries, but whenever I would lift more than 40 pounds it felt like my chest was being ripped apart. My doctor recommended another surgery to remove tissue and stem cells from my legs to inject into my chest in the hopes of repairing the muscle and giving a little more padding. This time, the surgery on my legs was far more painful than the small incisions to my chest. Cosmetically, my chest looked better, but it did not take the pain away. I was desperate to get back to work and to relieve the pain, so I agreed to my doctor’s next recommendation, and that was 26 injections of BOTOX® throughout my chest. It worked! The pain was lessened enough for me to work hard and lift weights to return to full duty a little more than a year after surgery. I was thrilled, but all the insecurities and anxiety came rushing back.
My self-confidence took a huge blow because I knew my body wasn’t the same, and I was hoping no one else could see it. The pain was starting to come back, and I would struggle to lift. On a day off, I drove to Boston and the doctor put a cortisone shot into the area near my collarbone (the worst area of pain). When that wore off, I headed back for more. Eventually, my doctor said the cortisone shots would do more harm than good, and if it hasn’t healed by now it probably wasn’t going to get much better. I was devastated because I knew what that meant. I was going to have to consider retiring. I tried to fight through the pain for a while, but I was also having immune system issues. I felt like I had the flu all the time, and another mass grew on my wrist. I was going to have another surgery to remove it, which turned into two surgeries a year apart for a second mass on the other side of the same wrist. I had to face facts and retire, under our cancer presumptive law, after 15 years, 10 of which I fought through multiple surgeries to stay!
The Next Step
Facing retirement was almost as difficult as dealing with cancer. I felt defeated, self-conscious, embarrassed, and lost. It has been seven months since I had to retire, and I realize that I have nothing to feel embarrassed or defeated about. I fought hard for years and gave 100 percent every day I walked into the firehouse! There were days toward the end that I moved a little slower because of pain and illness, but I still gave it everything I had!
I miss my job every day and still feel lost. Firefighting isn’t just a job; it becomes who you are, your identity for so long, and when that is ripped away it is difficult to find who you are outside the job. We all are drawn to the fire service for different reasons, but for me it was the excitement, the challenge, the thrill of going into places that most run out of, and to help people in their time of need. When all of that is gone, it is tough to transition to a quieter life.
I am grateful to my family, friends, and most of all my husband. He has been there through four of the six surgeries, the breakdowns, the fear and depression. I know it is difficult for him. He is feeling the same fear and anxiety I am. I know it hurts him to see me in pain or cry, yet he puts his feelings aside and comforts me. An example of how he put me first is when I had the second prosthetic put in. He had rotator cuff surgery a month before my surgery. He was not fully healed, but he slept in an uncomfortable recliner by my hospital bed. He also had to assist me to get up, shower, get dressed, empty the drain I had for a month, cook and clean, all with no complaint. He has done the same for each of the following surgeries and has gotten very good at putting my hair in a ponytail. He does his best to keep my spirits up and holds me when I need to let it out. He made me realize that you can’t do it alone; we are a team and we will face it together. I am very lucky to have him in my life!
I have always been an active person, and while I am still able to be active, I am limited and can’t lift heavy weight. I’m to the point now that I try to find the humor in it all. I have a lot of scars and I don’t hide them, even the emotional ones. I now choose to look at it as a battle I won, because I’m still alive and know that the little frustrations and inconveniences in life are nothing compared to cancer! I still have the need to help others, so I support and educate firefighters through the Firefighter Cancer Support Network and share my story. It took me a while to be able to put it on paper for all to see and to admit to my feelings and fears, but if I can help others going through a tough time, then it will be worth it!
Donna Luce-MacDonald was a member of the Providence (RI) Fire Department for 15 years. She participates in the department’s Honor Guard and Employee Assistance Program (helping members with stress debriefing, PTSD recognition, and getting help for substance abuse issues). Luce-MacDonald is a peer fitness trainer, setting up workout programs tailored to the individual firefighter, and was a member of the Firefighter Combat Challenge Team. As a former ballet dancer, she has been active her entire life, is heavily involved in fitness, and is working on a certification in nutrition. Luce-MacDonald has some projects in the works related to fitness, including a book for firefighters. She became acquainted with the Firefighter Cancer Support Network after a bone cancer diagnosis in 2005. Luce-MacDonald became actively involved a few years later as the Rhode Island state director and now sits on the board as vice president-East. She teaches cancer awareness classes, developed a cancer risk reduction SOP for the Providence Fire Department, and wrote and received a grant to buy a year supply of wipes for all firefighters in Rhode Island. Luce-MacDonald attends many conferences and seminars with the Firefighter Cancer Support Network.
