By Joanie Mulvey
December 1, 2020
When confronted with LMS, it is easy to think “OMG… I’m going to die”…. and become so scared and depressed. Yet, I recommend framing things to yourself in a different way. We can be grateful that our cancer was found and that, having had this warning, we still have time to do what matters most to us. Whether that is telling someone how much you love them or how much they mean to you, asking someone for forgiveness, learning something new, traveling, or spending quality time with loving family and great close friends.
I believe in my father’s attitude about life and God: “God still has ‘work’ for you to do here on earth”! So here is my journey about why I think I am still here, a survivor 12 years after my initial diagnosis of LMS. I hope and pray my story will encourage others to listen to their bodies and to focus on the things that bring them a joyful quality life!
When my body began sending a message that something was wrong back in 2007, I heard it—but getting doctors to listen was not so easy. I had been tall and slender all my life, but now I found myself waking to stomach pain, bloating, and constipation that drove me to visit my doctor, who pointed out that at 52, I was getting older now, so undergoing some physical changes was normal. I went to get a second opinion, and he recommended eating more fruits and vegetables with more exercise. Yet my symptoms persisted with new problems, this time in my teeth and gums.
A day finally came when I, feeling miserable and exhausted, decided to examine my abdomen. I felt around, trying to identify exactly where my various organs were located (I’m not a trained medical person). I discovered a lump on my right side, lower than my stomach. Scans were finally ordered, and growths were found wrapped around my colon. So in March 2008, my first knowledge of leiomyosarcoma began. I spent 28 days in the hospital with 2 surgeries removing 10 inches of my colon, gallbladder, and appendix. But at least I was able to go home!
My surgeon in Bismarck referred me to the Mayo Clinic in Rochester, Minnesota, where I was scanned at three-month intervals, as is recommended for LMS patients during their first two years after surgery. I continued to be troubled by digestive symptoms and in 2009, I needed more surgery to repair 5 hernias.
A strange pattern began to develop. I would have a scan that showed something (say, a possible lung tumor or inflammation in my original abdominal site), then that thing would be mysteriously absent from my next scan. This pattern continued for the next 9 years: at times, I had as many as 20 spots on my lungs, but the number constantly “waxed and waned”. I decided to not have recommended surgeries or begin chemotherapy. I strongly recommend seeing the same doctor consistently, rather than scheduling with whoever happens to be available at your clinic. Having someone familiar with your case is a big help in tracking changes between scans, and you as the patient can go back and reading all your tests and notes from the doctors.
Then in 2017, the cancer metastasized on my scalp — moving my cancer into stage IV. They then did a full-body PET scan and found LMS in my collarbone which was treated with radiation. I decided at that time not to follow medical recommendations to begin chemotherapy, for it is my body, my decision, and my quality of life!
Then in December 2019, I developed what I thought was sciatica. In May 2020, an MRI and PET scans revealed three lesions in my back. One of them was in my spine, pinching my sciatic nerve. Radiation was done on my back/spine. Again, I decided against the medical recommendations to begin chemotherapy. When I returned in August 2020, the tumors on my back were smaller and there were no “hot spots” on my PET scan.
As I think ahead to my upcoming scans in December, I plan to do what I have always done: learn all that I can, talk through every option thoroughly with my doctors, consult with my husband, and make my decision that takes into account the effects any proposed treatments might have on my quality of life. I have made these decisions, taking all the responsibility for the results.
I believe that there is no point in looking in the rearview mirror and thinking, well, maybe I should have done something differently. The past is a great source of knowledge, yet we have to stay focused primarily on the future, trusting ourselves, being positive, remembering what is important to us, communicating clearly with our families, and focusing on whatever gives us the most joy. For me, that is mostly my husband; our travel adventures, bicycling, our 3 children, our 10 grandchildren, lots of family and close friends, and a good glass of wine from time to time does not hurt.
I want to assure newly diagnosed patients that things get better. When you first learn that you have LMS, you are completely overwhelmed. You need to do whatever it takes to survive—and that may mean taking things just one hour at a time. It is difficult to be patient and remain hopeful when you are in shock, but after a year or so, you are likely to be more ready to fully process things and research LMS. In the meantime, it is critical to get yourself to the best doctors you possibly can and to stay healthy, so you are ready for whatever comes next.
I believe that we must keep going as long as we can so that science has a chance to catch up and help us, for we are alone. I was initially told that chemo and radiation do not work well for LMS and that it was only a soft tissue cancer; now, 12 years later, we know better, and there are many new treatment options.
My long time oncology doctor calls me an “anomaly”… I laugh because I never wanted to be anybody special, just little ole’ me!! My husband and I stay positive, laugh, cry, ride our bicycles, travel and have long serious talks regarding LMS, quality of life and death.
So, let me leave you with a few “Joanieisms” that have helped me navigate this journey.
- Learn to live your life to the fullest between appointments.
- Learn to laugh at yourself!
- My theory is all lumps and bumps are suspects!
- Advocate for the best for you! If what the doctor recommends does not feel right, advocate for you!
- Doctors are not gods, just very medically educated people trying to solve this rare cancer!
- Be strong … fight for you! You are stronger than you think!
- Always look to the positive!
- You still have “Work to do!”
- It’s always your decision… Your body, your quality of life! Your responsibility!
To my amazing oncologist doctor and his team at Mayo in Rochester, MN, super supportive husband, caring loving family and a few select crazy fun friends, I am grateful to them all! They have made the quality of my roller coaster life a much smoother ride… laughing, crying, and great memories!