In Part 1 of Rebecca’s story, she found herself in her doctor’s office, stunned by the diagnosis she had just received. Read Part 1 here.
Part 2 of Rebecca’s story provides a look into the mesothelioma treatment she underwent. Read it here.
One of the biggest difficulties for me was the loss of my career. Before I was diagnosed, I was working for the prison system in Wisconsin. I had earned my bachelor’s degree in psychology from the Ohio State University in 2002. I started working as a psychological services assistant at the male medium security prison in Oshkosh in 2003. After working for a couple of years, I started work on my master’s degree in clinical psychology in January of 2006. I finally completed my master’s degree in May of 2010. By that time, I had taken on a lot more responsibility at my job and I was very dedicated and focused on my career. I had plans to get licensed and become a Licensed Professional Counselor. I was earning clinical hours towards that goal when I was diagnosed. Although I tried to keep working for a year, it was clear that I would not be able to work at a full-time level, and I determined it was in my best interest to stop working and focus on my health. My last day at the prison was Oct. 1, 2012.
One thing that I think many cancer patients find surprising is losing friends throughout their battle with the disease. I have found that friends that I thought would be in it with me for the long haul, suddenly didn’t have time to spend together. To be fair, my life and what was important to me changed dramatically. I think some friends also found it difficult to spend time with someone that they may lose. The fact that I’m battling a terminal cancer may make getting close to me harder for some. I know friendship is supposed to unconditional, but I think most people realize that’s not true. Thankfully, I have a great support system, and I have cherished friends who have stuck around during the tough times.
One of the best things I did to cope with my diagnosis was learning to be a bit selfish. I started seeing a therapist and I quickly realized that what I thought was selfishness was more accurately self-care. When you are battling for your life, you must learn to prioritize what is important to you. There were days when I planned what I wanted to do without a lot of thought for others. Of course, I didn’t put anyone out and I wasn’t unrealistic; I was simply more assertive regarding my needs. If I needed a day cuddled up on my sofa with a brownie sundae watching funny movies, that’s what I did. I worked on finding a balance and determining what would make up my “new normal.”
One thing that I continue to struggle with is living in a different body than I anticipated. Because of all the treatment I’ve had, I live with chronic pain. I also have a condition that I was born with called Klippel-Feil Syndrome. It is a congenital fusion of my cervical spine. I have fused and missing vertebrae in my neck. An MRI showed spinal stenosis, bone spurs and arthritis. I’m now facing major surgery on my neck to fix the spinal stenosis and pinched nerves. I have chronic back pain and pain in my lung. I also must be careful about what I eat because my digestion has never been the same after two HIPEC procedures. I often realize that my mind is 39 years old, but my body is closer to 80 years old. Most people my age are at the height of their careers, have many hobbies, are active, and have a lively social life. There are days when I hurt so much I can’t leave the house. I am often presented with opportunities and want to jump in and say “yes,” but I’ve learned that I must consider each opportunity and determine if I have the physical stamina to enjoy it and if it’s worth using up the energy I have for each day.
Another aspect that I think all mesothelioma warriors find difficult is the uncertainty of the future. It’s like we are in a long-term war with the cancer. We know that there will be battles from time to time when the cancer progresses. However, we never know when we will reach our final battle. We know it’s a war that we probably won’t win in the end. Living in between the battles can be very difficult because you never know when the next battle is going to take place and we don’t know the outcome. It’s difficult when it comes to having a career, relationships, even something as benign as planning a vacation. The uncertainty of my future is always in the back of my mind.
How do I deal with that? I live each day at a time. It’s all I can do. My faith is extremely important to me. I am a devout Christian and my faith tells me that tomorrow isn’t promised for anyone. Each day truly is a gift from God. One thing that I have found to be vitally important to my mental health is finding things to be thankful for in each day. Even if it’s just being thankful I was able to get out of bed, or the sun shining, or having a warm home; it’s important that the focus is put on the blessings in my life, instead of the things that lead to complaining. The Lord has blessed me by giving me a challenge in my life that has lead me closer to Him. I know not everyone is religious and people practice different faiths. My faith in Jesus Christ and His role as my Savior and Father has been crucial to surviving and, at times, even thriving during my battle with mesothelioma. My faith tells me that this is the closest to hell and the farthest from Heaven that I’ll ever be; I am promised a place in Heaven.
I think, at times, many cancer patients forget about the effect of their diagnosis on their family members, friends, and caregivers. It can be especially difficult for those in the caregiver role. For me, my mom was my primary caregiver. She doesn’t talk to me a lot about how difficult it has been for her, but I know it’s been a very stressful and emotional time. The things that I worry about also worry her. When I’m having a bad day and I’m in pain, she immediately starts to worry and, as most moms do, she wants to make it all better. Sometimes, it’s difficult for her to understand that she can’t make everything better. There are going be days when it’s just a bad day.
Caregivers often get in the role of “fixing” when there isn’t anything that can be done. Sometimes, it’s best to just let the problem exist and be there for support. There were times my mom noticed that I was struggling, and she would remind me that I must fight and that I can’t stop or give up. While that is good advice, there are times when I just needed to rest and not fight for a day or two. There were days I just needed to validate my emotions and be angry, sad, and defeated. As long as a warrior can move on from those emotions, it is perfectly legitimate to feel angry and sad when facing what we are facing. I urge all caregivers to let their warrior have those emotions and look forward to a better day.
As noted earlier, I got involved with the Meso Foundation quite by accident. My friend recommended the link to me and I looked online. Since then, Mary and the staff at the Meso Foundation have quite literally been a lifesaver for me. Being from a small city in Wisconsin, finding effective treatment for mesothelioma simply did not exist. I am an active member in the Facebook support group and it has been such a huge blessing. Knowing that the Meso Foundation is not associated with any law firms and that they do not have any ulterior motives in helping mesothelioma warriors is so important. We need someone in our corner. We need folks who can find and manage funds for the research that might literally save our lives. I need the support of other people going through what I’m going through. I have made some great friends through the support group and the symposiums. I could go on and on about the Meso Foundation. It is a great community of people and dedicated staff who are working to save lives.
Join the Meso Foundation in Minneapolis on Friday, June 8 for the International Symposium on Malignant Mesothelioma. This annual conference is geared to attendees from all walks of life, including patients and their families, advocates, medical professionals, and those who have lost loved ones to mesothelioma. Come together with the mesothelioma community and take part in both scientific sessions and community conversations. Learn more at curemeso.org/symposium.
