A stage 4 patient testimony in support of improved patient education tools in the U.S.
“I remember the day I went in for a chest x-ray because I thought I had pneumonia. I got a call approximately two hours later telling me there was something suspicious that showed up on the scan. The first thing I did was go to the internet for answers. I did not know if the information was accurate or trustworthy which only added to the frustration. It was the first and last time I ever researched lung cancer on the internet.
An on-line, medically accurate, gentle and patient-centered lung cancer education program would have been a wonderful resource for me, my husband and my children at the time of my diagnosis. I might have been better equipped to deal with the disease and it would have reduced my stress. Even now as I’m living with Stage IV Lung Cancer, it would be a wonderful resource.
While an oncologist is a wealth of knowledge, there is simply not enough time to have all your questions answered. A person just being diagnosed with lung cancer is under so much stress, it is hard to even know what questions to ask. A comprehensive tool like the Animated Patient Education Program being proposed by A Breath of Hope Lung Foundation and Mechanisms in Medicine, their medical technology partner, would be beneficial to the patient, family and caregivers alike. My hope is all social workers and nurse navigators at each hospital across the country will soon have access to this comprehensive package and share it with their patients.
Lung cancer is scary but having accurate, up-to-date information about the disease alleviates much of the stress and prepares the patient and family for the journey they are about to face. I am very excited to see the finished product.”
Bonnie’s Full Story…
In May of 2013, I was working out and running a couple miles each day. On our family vacation in Arizona, I climbed Camel Back Mountain in Scottsdale, Arizona. But, it all started to fall apart in approximately May of that same year. I was so tired and everything seemed like an effort. I had roving pains. Some days my right shoulder hurt, then my left. Other days my abdomen hurt and about the time that stopped, my liver would hurt. One persistent ache never seemed to leave and that was heaviness in my chest.
Finally on a Monday I decided to see the doctor. I got an appointment during my lunch hour. After describing my symptoms, the doctor decided to have a chest x-ray done. I was only back to work for about an hour when I got the call from the doctor’s office. The x-ray showed something on my lung, and they wanted me to have a CT. The CT was scheduled for Tuesday. Again, by the time I left work, I got the call that there were some concerns with my CT, and the doctor wanted me to see a pulmonologist. I was able to see the pulmonologist on Friday morning. I was told that I had a large mass on my left lung. The cancer had spread to my liver, abdomen and lymph nodes. I also had a lump on my breast as well. My only response was simply, “This sounds like Stage IV Cancer.” The doctor nodded his head in agreement. And so, my journey with cancer began.
I called my two sisters and told them the news. They contacted my four brothers. My mom lives about an hour out of the Twin Cities. I decided it was important to tell her in person. On the way to my mom’s, I remember crying and praying to God asking him to give me two years so I could get my youngest daughter through high school. I didn’t care how healthy I was. I just wanted to be there. God answered my prayers with more than I could ever expect or imagine.
I can see God’s hand guiding me through this journey. A friend of mine from high school who is a nurse called me after she heard the diagnosis. She also had breast cancer and was in the middle of treatment. She asked if I found an oncologist. I advised her that we were still in the middle of so many tests to determine what type of cancer I had. She said it was crazy to wait and would get to work on finding me a doctor. Within in an hour, she called back and told me she had a doctor’s appointment at the University of Minnesota with a great oncologist.
My oncologist told me the goal was to find a match to my genetic markers. This didn’t mean much to me at the time. But, she didn’t want to wait for the results because she felt I needed to start chemo immediately. I started chemo on July 1, 2013. By the end of July I had lost 22 pounds. My day consisted of moving from my chair in the bedroom to my bed. During this time period, the doctor called and told me they did not find a match to my genetic markers. I felt too lousy to even care, but I remember her saying that it was very disappointing.
By the end of July, I ended up in the emergency room. My hemoglobin was at a 4.5. The normal hemoglobin level is approximately 12 or 13. I stayed from Sunday evening until Tuesday getting blood transfusions. The intestinal bleeding started after the transfusions. I returned to the hospital once again for more tests in an effort to determine what was causing the bleeding. After all the tests, the doctor told me they couldn’t find the reason, and it was probably from the cancer. My response was simple, “That means there is nothing you can do for me.” He shook his head in the affirmative. I remember thinking there was nothing I could do. This battle was in God’s hand.
The bleeding stopped for no apparent reason. I had a CT scan before I left the hospital on Friday. I met with my oncologist on Monday. She told me the chemo didn’t work, and we would need to switch to a different chemo. But, then she went on to tell me that 20 minutes before my appointment, she got news from a laboratory she was working closely with that they had found a match to my genetic markers. There was a new drug on the market that was showing positive results, but it was not FDA approved for my type of cancer. She told me to give her a couple days to get everything arranged. I had heard nothing but bad news for the last three months I didn’t know how to respond to good news. I remember the doctor looking me in the eye and saying, “This is good news Bonnie.” I think it was the first time I cried in the doctor’s office.
The appointment was on Monday and by Thursday afternoon the oral chemo arrived from a specialty clinic somewhere in Pennsylvania. I took my first pill that afternoon along with a prayer to God for healing.
I had a pair of pajama pants with a string that was tied in a knot. I couldn’t loosen or unloosen it. I had a large mass in my stomach that protruded out. It looked like I was about five months pregnant. Whenever I wore the pajama pants, I would pull the string over my large stomach and let it rest on the top of the tumor. It’s how I kept my pants up. One day after having taken the chemo for approximately two weeks, I was walking from the bed to the chair and my pants fell down. For the first time, I started looking at my stomach. The mass seemed smaller. I tried on a pair of jeans that I wasn’t able to get into because they tied right over where the mass was located. The jeans fit. The mass was shrinking!! I started crying once again. Now I seemed to cry over everything. Within another couple weeks, the mass was completely gone. My stomach looked like that of an 18 year-old. I was still super skinny.
My CT in September proved that all the tumors were shrinking, not just the one in my stomach. I started working part-time again in October. Each scan continued to show the tumors were getting smaller. Since the lowest point in my illness, I have put on 42 pounds. I am 20 pounds heavier than before I got sick. I wear the weight with pride!!
My miracle is not that I beat Stage IV lung cancer, because I haven’t. I live scan-to-scan and day-by-day. I am still on my oral chemotherapy. I never like to make plans beyond my next scan date. But, for me the miracle is that after two years I haven’t missed any of my daughters dance performances. I sit in the bleachers watching her do what she is so passionate about and continue to praise the Lord for answered prayers. I now appreciate days when my three children and husband are sitting together for a family meal. It is a “thank you Jesus” moment. I have been able to watch my youngest daughter totally enjoy both her junior and senior year of high school. She comes and goes to all her different activities knowing that I will be home when she gets there. I have a 25-year-old son who is a man of few words. But, since my illness he gives me a hug each time he sees me and tells me he loves me. Again, it is a thank you Jesus moment. I get to enjoy the company of my oldest daughter who still lives at home while getting her Master’s Degree. We have so many special moments together. I thank God every day for her. Feeling good enough to enjoy these special moments with family and friends is my miracle.
Anyone diagnosed with cancer handles their journey in their own unique way. I never spent time reading about lung cancer because the statistics are horrible. I have put my trust in God. I see his hand in helping me find a wonderful oncologist whom I trust. I have a team of prayer warriors that faithfully pray for my continued healing. I have a God who loves me and watches over me. I might not beat this thing, but I will always have God beside me leading me through this journey of cancer.