I am reposting this because it seems like every time I turn around in 2020 someone else is telling me they know someone with cancer. I wrote this blog 4 1/2 years ago at a really tough time in my life. I am happy to report My Man is still in remission and recently his oncologist in Silicon Valley told him he was a “walking miracle!”. Taking charge of your healthcare includes seeking a second or third opinion (we sought six!), joining a support group, or just flat out crying.
From Dec. 27, 2015:
When I started this blog, 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 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 bones. The urologist prescribed hormone therapy. Oddly enough, 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 less than two years before, we both figured we would grow old together. We were 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 (more than once). 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 wrote this blog not to detail every tear I have shed. I wrote 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 even worse, 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 5 pm meeting helped us. The first thing I noticed when we walked into the meeting was how much older the men were than Nick. They were survivors. They could tell we were lost and they gave us the strength we needed at that exact moment in time. They gave us time to talk, to cry, and to tell our story (I can honestly say I don’t remember much of what they said because I was crying so hard when Nick was talking). 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 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. A friend 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 – she’s was screaming at me about the importance of it! 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. 24 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 were 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.
Nick and I set up a Caring Bridge page to keep friends and family in the loop. 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.
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 has a lot of cancer on both sides, I also get a breast MRI every year as well. I’ve had the BRAC 1 and 2 tests 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 in 2013, members of the American Urological Association (AUA) got together and made a series of recommendations concerning prostate cancer screening. They discouraged screening men who were 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 extensively: http://www.zerocancer.org. We wrote our lawmakers for more research and testing! 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 cried more than once writing this blog. It was good for me! It made me feel stronger! I encouraged 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 made sure Nick is feeling well every day with rest, diet, and exercise. But, I also had to care about myself and give myself a break. I prayed and reached out to friends and family for strength. They have been so helpful and I appreciate that. I didn’t feel sorry for myself or for Nick. After all those tears, I was even stronger! We’ve got a lot more living 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?). 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!
LAUGH! Enjoy said. Nothing everything can be doom and gloom.
EVEN IF YOU DON’T FEEL LIKE IT – EAT RIGHT and EXERCISE DAILY. There were so many articles written about exercise and diet in regards to cancer. Heck, some doctors believed if you exercised every day (walking 30 minutes!) and ate a plant-based protein diet (cut out the animal protein and dairy products), it was 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 in the future, won’t cure his cancer.
BE OPEN TO NEW IDEAS! With the help of a friend, Nick also visited a Chinese medicine doctor in Oakland, John Kotto. He did acupuncture 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 helped us understand what chemo was and what side effects the different medicines had on Nick. We also read about what supplements were 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 believed we have to live a normal life filled with smiles, laughing, and love. I still yelled at him and he still yelled at me! He still did the dishes every night and took 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!