Janet: Thank you Fawn, I am excited to be presenting. Before we actually move on to the presentation, I want to explain a little bit about my title of how being an occupational therapist has taught me to embrace living with a terminal illness. To being diagnosed with cancer can be devastating, but my own personal feeling is that this has been a gift for me. I think my skills as an OT have helped me. I have been able to slow down a little bit and live life to its fullest, as we always say as OTs. My extra skillset, as an OT, has given me the ability to adapt to this disease, and now I really know the importance of OTs being involved in treating individuals that have cancer. This is a big emerging practice area and every cancer patient should be referred to occupational therapy. My last disclaimer is that I am presently undergoing chemotherapy treatment. You might get to see firsthand what it is like to work with someone who has chemo brain. We will talk a little bit more about that as the presentation goes forward, but I do live with that and experience that every day. You might see that I have a few word finding issues which is one of the hallmarks of the chemo brain. You will get to kind of interact with me and see that firsthand.
What Is Cancer?
Cancer is a global term used for a group of diseases that are characterized by the growth and spread of abnormal cells. We know that there are many different types of cancers. Our bodies have these cells that are growing at a really fast rate, and the cause of many cancers are still unknown. It is amazing that we still do not know how cancer is caused. We do know that there are external or lifestyle factors that play a role in this such as obesity, smoking, and poor nutrition. There are also cancers that are formed from genetic mutations, hormones, and different immune conditions. My personal type of cancer is called a P13K genetic mutation. This was only discovered after I had been in treatment for a few years. Initially, patients may not know the initial cause or etiology of the disease. However, it is estimated that 20% of all cancers in the U.S. could be prevented as they are caused from a combination of those external factors (World Cancer Research Fund). As we go forward and look at OT's role, I think expanding the wellness arena is one of the ways that we could help to kind of reduce some of the cases of cancer in the US.
According to the American Cancer Society (2017), we are going to see an estimated 1,688,780 cases of new cancer cases, or newly diagnosed patients. Those numbers to me are staggering. However, they have also found that the five year relative survival rate has increased. When you are a cancer patient, they always talk about survival rates in five year intervals. This tends to be because of the research and how they follow the longevity of a patient. Typically when you get diagnosed, one of the questions is what is my five year survival rate. For my particular type of cancer, I know that only 17% of people are still alive at the five year mark from when they get diagnosed with my type of cancer. You are always striving to reach that five year mark. We have seen an increase in survival, 20% among Caucasians and 24% among African Americans. They did not present any other statistics. Socioeconomic status also has an impact on the different rates of survival. It is estimated that by the year 2024, we are going to have over 19 million individuals in the US alone that are either living with cancer or surviving cancer. We need to start looking and treating this disease as a chronic illness. I remember when I first got diagnosed, I did not have that outlook.
Some other statistics on survival rates are that the greatest rate of increase of survival has been 2% per year from children ages zero to 19, 1.8% among men, and then 1.4% among women (www.cancer.org). A lot of what they attribute that change, in the survival rates, is due to early detection. We are doing a better job with that, and then obviously with the research in the cancer treatments. More people are surviving cancer than have in the past.
I also wanted to provide you with a few more facts where the American Cancer Society sees the growth of cancer in 2017. Among men, 19% of these new cases will be prostate cancer, 14% lung and bronchial, 9% colon and rectum, 7% urinary, and 6% melanoma. In women, the largest number of newly diagnosed cases is predicted to be breast cancer at 30%, 12% lung, 8% colon, 7% uterine or gynecological cancer, and 5% thyroid. From these numbers, you can see that breast cancer is on the rise among women and prostate cancer for men.
My Journey
I now want to tell you about my journey. Again, I feel the skillset of being an OT has helped me get through this, and perhaps I have not suffered as much depression and anxiety as other folks newly diagnosed might go through. I had this skillset to help me cope as well as having all of my other OT family and colleagues around the world help me adapt to this disease. Often, we are so quick and caught up in the every day that you immediately start working with your clients and developing your treatment plan instead of sitting back, observing our client, and really listening to their story. It is important to take a moment to be a good active listener. This is my experience living with cancer and that of several of my friends who have had cancer. We are not going to be able to do a lot of that today because you cannot make eye contact with me and I cannot see you smiling, but hopefully you can hear my smile through my voice and can be present in the moment.
My journey starts in 2009. I was on top of the world back then. I was running two successful pediatric therapy clinics, had a toy catalog company, was traveling around lecturing, was serving in many volunteer positions, and really enjoying and living my life. I had just come back after presenting on autism in California. As I came off the plane, I noticed my legs were a little extra swollen, and they were not going down, I thought that it was a little odd. I thought it was too much flying, but went to my primary doctor to check. I was not having any other symptoms. They ran some tests and thought they found a cyst in my pelvic area. They opted for surgery as they thought it was on one of my fallopian tubes. Once they were in there, they found it was actually a swollen lymph node. They did a biopsy. My doctor did not seem alarmed.
Figure 1. Timeline of events.
You can see that I have a clover symbol on the year 2009, because on St. Patrick's Day, I received word from an oncologist that would change my life. I will never forget those words, "Your biopsy came back positive for cancer." I remember dropping to my knees that day. One of my staff members took me out, and we went to a little chapel near my clinic. We went in and said a prayer. As you can imagine, I was blindsided by this news. I was shocked because I still had no other symptoms. I went to one oncologist who told me I was lucky to have an appointment with her because the waiting list was so long, and she had no answers for me. I quickly left that practice and went to Dana-Farber in Boston.
At this time, I was living out of state in New Hampshire. I went and had my first PET scan. Still everybody thought that surgery would be able to get rid of this cancer. After they did some more tests, I was told that I had stage four cervical cancer that had already metastasized to my pelvis, abdomen, lymph nodes, right lungs, spine, and rectum. I felt great and was still in disbelief. I was given a prognosis of six months to live. Of course, me being an OT, I kept thinking I needed to advocate for myself. I needed to research this and find out the best treatments. I found a great book by Kris Carr called, The Crazy Sexy Cancer Survivor. This is geared more towards females. I will never forget one of the lines in her book, "Cancer is like managing and running a business." She was young, I believe 26 years old when she got diagnosed, and she had been working at Elle Magazine. Boy is she right. It took more to run and manage this business, than it did to run my two clinics at that time.
I began my journey of daily radiation. I had 36 treatments: 12 cycles of chemo, six brachytherapy radiation treatments, and a couple surgeries. This occured from about 2009 to 2010. Then on Thanksgiving of 2011, after all this treatment, all of the tumors were gone from everywhere except for two lymph nodes in my pelvis. I had surgery to remove a chain of lymph nodes in my left leg. This fact will be important later as I call my left leg now my "trick leg," and you have to have a sense of humor when dealing with this. Then I had to go in for a different surgery where they were goint to try to implant radioactive pellets up into those two nodes in my pelvis. Unfortunately when they opened me up, I had so much scar tissue from all the radiation damage that the vascular surgeon described it as being like cement, and they were not able to do the procedure. Once again I was only given a prognosis of six months to live because they did not feel there was anything else that they could do for me.
