When I started this blog three months ago, I wrote about how much I loved an unplanned day. Waking up with nothing planned, not a care in the world. It was such an amazing feeling! Those types of days gave me time to learn a new recipe, paint a dresser, or even better – go wine-tasting or hiking.
November 18, 2015 wasn’t supposed to be a day I would remember the rest of my life. I got up early, exercised, and started working. I put the finishing touches on a new blog and planned to walk downtown to get a mani-pedi. I felt really happy and thankful for everything in my life! As I walked across the street in the sunshine to the Beauty Lounge, I answered a call from my husband. My life would change forever in just a few seconds. “The doctor thinks I have prostate cancer,” Nick said.
I turned around, walked home, and waited for him. When he walked in the door, he sat down on the couch with me and explained what the doctor said. We cried together. A few days later, after a biopsy of his prostate, the urologist confirmed Nick had prostate cancer. Nick’s PSA had jumped from 75 to 96 in three weeks and his Gleeson score was a 10 on every sample, but one, which was an eight.
To find out if the cancer had spread out of the prostate, Nick then had a bone scan and a CT scan. On Dec. 2, with his two adult sons in the room with us, the doctor explained Nick had metastatic prostate cancer. The cancer had spread into the lymph node and bone. The urologist prescribed hormone therapy. He was vague on whether we should seek a second opinion. When pressed, he suggested visiting an oncologist in January who was currently out on paternity leave. We walked out and scheduled a follow-up appointment with the urologist for January.
We were in shock. When we got married two years ago, we both figured we would grow old together. We are healthy, exercise daily, and eat right 95 percent of the time. Nick looked and felt great. The only symptom he had was frequent urination.
We went home and cried. I went to bed that night, crying. I woke up in the middle of the night, crying. The next morning I woke up, crying. I cried as hard as I ever have in my life that morning. I wanted answers from God, honestly from anyone who would tell me my husband would be ok. I am writing this blog not to detail every tear I have shed in the last six weeks. I am writing this blog to reinforce a few things we have learned.
SUPPORT GROUPS ARE ESSENTIAL. Dec. 3 I felt like I couldn’t breath. I was terrified for my husband and for myself. How was I going to be strong enough to help him when I couldn’t stop crying? With tears streaming down my face, I Googled: PROSTATE CANCER SUPPORT GROUP, MOUNTAIN VIEW. I called the phone number and found out there was a meeting that very night. California has a lot of prostate cancer support groups!
I can’t tell you how much going to that meeting that night helped Nick and I. The first thing I noticed when we walked into the meeting was how much older the men were than Nick. They are survivors. They could tell we were lost and they gave us the strength we needed at that exact second. They gave us time to talk, to cry, and to tell our story. After we finished, Roger said “You don’t know it right now, but you have added years to your life by coming to this meeting tonight!” They then gave us amazing information, support, and love. They recommended the best doctors and told us who to avoid. I am so thankful to Roger, Scott, Walt, and the others who embraced us that first night. They gave us the confidence we needed to believe we could fight cancer. They called and emailed their doctors to help Nick get an appointment as soon as possible.
LISTEN — TAKE CHARGE OF YOU! Our urologist was well schooled and well trained (NYU, UCSF, etc.). We felt confident in him and his diagnosis. He believed the standard hormone therapy would lower the PSA (beat down the cancer), but he was pretty vague about seeing an oncologist right away.
Thank GOD for amazing friends who have been there, done that. Lori Sheldon called me the morning after the diagnosis and gave me some tough love. She wanted us to get a second opinion from an oncologist (cancer doctor). She insisted not just one second opinion, but that we go to the best places and talk to a number of doctors! A breast cancer survivor, at first I thought she was just being pushy. After a couple of minutes, I stopped being stubborn and I listened to her. She was RIGHT – we lived in Silicon Valley with some of the best doctors in the world! As soon as we hung up, I started reaching out to Stanford, UCSF, and a number of other doctors that were recommended both in the Bay Area and in Los Angeles. Twenty-four hours later, we had five appointments set for the next week, including one down in LA with the Prostate Oncologist Specialists.
Fast forward to the next Friday, nine days after Nick was diagnosed with stage four prostate cancer. We had a team of doctors we were thrilled about and the first phase of his treatment plan set. Because Nick was only 55, they wanted to use an aggressive type of treatment, including chemo. We concurred. We were so thankful we had Dr. Darmody and Dr. Turner in our lives and on our team: #TeamYoung. We could tell from the first visit that their staff, including the nurses at El Camino Hospital, were amazing. We already felt like they are a part of our family!
STRESS-FREE WAY TO TELL YOUR STORY. In addition to researching prostate cancer, talking to survivors as well as scheduling and attending doctor’s appointments, coming to grips with what was going on in our lives was exhausting. And then add on top of that, calling each person to tell them the latest news. This wore Nick and I out.
Last year my cousin Jamie’s husband, Chris, was diagnosed with leukemia. She set up a www.CaringBridge.com page to provide everyone with information. It gave her a chance to let everyone know what was going on, to vent, and write about how everyone was feeling (Chris, her, their son, family). This was a great idea and I talked to Nick about it. He embraced it right away. It helped him explain to many people what was going on with his treatment, his research, and how he was doing physically, mentally, emotionally, and spiritually. He could write and send messages to many people in a matter of a few minutes. It also gave him a chance to thank people for their love and support. Read Nick’s Caring Bridge page by clicking this link: Nick Young’s Caring Bridge page.
BE PROACTIVE! Women get pap smears and go to mammogram appointments on a regular basis because of their yearly OBGYN appointments. If you are over 40, keep up the good work by continuing to go every year! Because my family have a lot of cancer on both sides, I also get a breast MRI every year as well. Two and a half years ago, I had the BRAC test done. MEN AND WOMEN: Be proactive about your health care! Get a physical completed ANNUALLY!
NOT EVERY RECOMMENDATION FROM A MEDICAL ASSOCIATION MAKES SENSE. A simple $40 blood test with my husband’s yearly physical would have found prostate cancer (with a rising PSA level). But two years ago, members of the American Urological Association (AUA) got together and made a series of recommendations concerning prostate cancer screening. They discouraged screening men who are at average-risk under the age 55. If you have any prostate cancer in your family and you are over 40 – please insist on a yearly PSA test (blood test and digital rectal exam). Insist on it after 45, whether you have prostate cancer in your family or not.
Why? Prostate cancer is the most common non-skin cancer in America, affecting 1 in 7 men. If you have a family history of prostate cancer, you have a 1 in 3 chance of getting it! 1 in 3!! In 2015, approximately 220,800 men will be diagnosed with prostate cancer, and more than 27,540 men will die from the disease. One new case occurs every 2.4 minutes and a man dies from prostate cancer every 19.1 minutes. For more information on prostate cancer, read the American Cancer Society website. Don’t go out to dinner one night a year and spend that $40 on a PSA blood test!
And this is another site we have read on extensively: http://www.zerocancer.org. We will be writing our lawmakers for more research and testing in the upcoming new year! You can do the same for all testing and research of every type of cancer! People always tell me I am the strongest person they have ever met and I will be an advocate for prostate cancer and earlier PSA testing!
CRY! Go ahead and cry. It’s ok. I have already cried writing this blog. It’s good for me! It makes me feel stronger! I encourage Nick to cry as well. Crying opens the soul to more healing. As the caregiver, have some outlets, whether it’s exercise, talking to friends, or buying some crayons and a coloring book. I make sure Nick is feeling well every day with rest, diet, and exercise. But, I also have to care about myself and give myself a break. I pray and reach out to friends and family for strength. They have been so helpful and I appreciate that. I don’t feel sorry for myself or for Nick. After all those tears, I am even stronger now! I got a lot more living with my man to do!
PRAY! If you believe in God, PRAY! Ask others to pray with you and to pray for you! If you don’t believe in God, then talk to your great grandparents up in Heaven (wait, if you don’t believe in God – do you believe in Heaven?). Write in a journal, talk to friends and family, and express yourself in a way that makes you feel happy. Being happy and looking toward a bright future is key!
EVEN IF YOU DON’T FEEL LIKE IT – EAT RIGHT and EXERCISE DAILY. There are so many articles written about exercise and diet in regards to cancer. Heck, some doctors even believe if you exercise every day (walking 30 minutes is a start!) and eat a plant-based protein diet (cut out the animal protein and dairy products), that’s half the battle with prostate cancer. Don’t wait until you get cancer to eat right and exercise. Our nutritionist told us what Nick ate didn’t give him cancer and what he eats now, won’t cure his cancer.
BE OPEN TO NEW IDEAS! With the help of our Feng Shui master, Aelita Leto, Nick also visited a Chinese medicine doctor in Oakland, John Kotto. He did acupunture on Nick (which Nick loved!) and recommended a number of supplements, including Life Pak Nano.
READ! We read articles on prostate cancer every day. The Internet has helped us understand what chemo is and what side effects the different medicines will have on Nick. We also read about what supplements are good, and new recipes for a diet filled with fish, vegetables, and fruit.
LIVE LIFE TO THE FULLEST: Throughout it all, some days we need to disconnect as well. We have to give ourselves a chance to breathe. It’s hard some days not to think about “what if” when fighting stage 4 cancer, but Nick and I believe we have to live a normal life filled with smiles, laughing, and love. I still yell at him and he still yells at me! He still does the dishes every night and takes out the trash. Please don’t feel sorry for us or for yourself if you have cancer. Cry or scream, then get up and get moving! We will win and so will you!
If you have suggestions for us or for others fighting cancer, feel free to leave me comments! We all are in this fight together!
Why Travel, Cooking and DIY? A creative type, I have always loved painting and decorating as a hobby. Upcycling is a real passion. My mom was a Home Ec teacher when we were growing up. I learned a lot from her and because I love hosting get-togethers, I had to step up my game in the kitchen as well. And lastly, my love of travel comes from my Grandma Schmitt.
An Illinois native, I worked in the White House Communications Agency early in my career (President Reagan), prior to returning to Illinois State University to finish my undergraduate and Master's. After a couple of post-graduate internships (minor league baseball and Big Ten Conference), I then worked in college athletics full-time for more than 22 years -- first at the University of South Carolina for 15 years and then at Santa Clara University for the last seven years. We moved to Tampa, Florida in Dec., 2016 after spending 8.5 years in Northern California.