TERESA: What brought you to Mayo Clinic Connect?
@mnewland99: I found Mayo Clinic Connect by chance when I was searching the Internet for information about the meaning of a rising tumor marker called CA19-9 and pancreatic cancer. I felt like my doctors weren’t providing me with the information that I needed. My oncologist’s nurse practitioner told me there was no need to panic about my rising CA19-9. Ironically, both my oncologist at the time and my surgeon advised me to stay away from the Internet. Thank goodness I ignored their advice! On Mayo Clinic Connect, I found helpful information and people in similar situations.
TERESA: What motivates you to take part in Mayo Clinic Connect?
@mnewland99: It’s such an active community and there’s an incredible sense of camaraderie. I have learned so much from Mayo Clinic Connect that I feel like it literally saved my life.
@markymarkfl had a journey and mutations similar to mine, so when he wrote that it was an MRI that caught some metastases in his liver, I asked my then oncologist if she would order one for me. Luckily, she agreed and the MRI showed two small lesions in my liver, which confirmed the reason for my rising tumor marker.
TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?
@mnewland99: There are so many members at different stages of this cancer; some battling pain, nausea, loss of appetite, some on hospice, etc. and yet everyone takes a little time away from their own journey and finds a way to offer information that can help another person. I feel even though I have not met anyone in person (yet) that we are friends. There is no judgment. You get a real sense of empathy and understanding from members, rather than pity which you sometimes get from people outside of this forum, unintentionally I suppose.
TERESA: What support groups do you participate in?
@mnewland99: Before I found Mayo Clinic Connect, I used to participate in a Zoom online group through my hospital. It was right after my surgery, and I did get some helpful answers. Currently, the Pancreatic Cancer support group on Mayo Clinic Connect is the only group that I am a participant in.
I have sought offerings like beauty services (wigs, makeup) for cancer patients through some medical groups in my area that offer it for free.
TERESA: Tell us about a meaningful moment on Mayo Clinic Connect.
@mnewland99: When I first came to Mayo Clinic Connect, @markymarkfl responded to a comment I made and sent me some links about the significance in a trend of rising CA19-9. It literally saved my life because I was able to catch my metastases early. Also, @gamaryanne made a comment about cisplatin not necessarily being needed if you do not have some particular mutations (BRCAs and PALB). I talked to my oncologist about it and he agreed that there wasn’t any evidence that could verify 100% that cisplatin would make a difference for my ATM or KRAS12D or TP53 mutations. So it has been dropped from my chemotherapy protocol (at least for now as I’m seeing if it makes a difference in my tumor marker). Obviously, having one less chemo drug in the mix has been a lot easier on my body and a lot lighter on my pocketbook!
Also, the posts from relatives or friends of cancer patients like @steveron @breemichelle26 and @mommacandy; their level of caring has so impressed me. I wish I could name everyone. Really everyone on this forum that has taken time to make a post and respond to others in such a kind and supportive way has literally restored my faith in humanity; especially when things in our world seem so divided at times.
TERESA: What surprised you the most about Mayo Clinic Connect?
@mnewland99: The level of knowledge about pancreatic cancer from Connect members has astounded me. I have somewhat of a scientific background from my education, and obviously we are so lucky for members like @stageivsurvivor who has a wealth of information about this disease and has helped so many of us. There are so many others who have provided so much helpful information that is beyond my immediate comprehension. When I joined this group, it was to find some information about pancreatic cancer; I never thought I would form a connection with the members where I often refer to members as my online “friends”.
TERESA: What energizes you, or how do you find balance in your life?
@mnewland99: Finding balance is the greatest challenge living with this disease! We all have an expiration date. Nobody gets out of this (life) alive, but when you’ve been diagnosed with pancreatic cancer, you have a better idea that it’s going to be sooner rather than later, ha ha.
I have immediate family members (you KNOW who you are) who have been there for me; even my nieces and sister-in-law (ex) came from Australia to visit me. I go out to lunch with friends I used to work with and we talk for hours about our old job, politics, or trips. I forget about my battle with pancreatic cancer for those hours that I’m with them laughing and joking. I try to keep working in my environmental consulting business, getting contracts when I can, and getting different certifications in my field.
Also, I have a good oncologist who is very calming and empathetic. My faith helps with balance although it has wavered sometimes during this journey. I remind myself not to ask “why me?”
TERESA: Tell us about your favorite pastime or activity.
@mnewland99: I’ve always loved the ocean environment, even though I do not do any ocean sports – I’m not athletic at all! But my husband, and sometimes my son, walk with me in the nearby Bolsa Chica Wetlands. I also have a bucket list. As a result, I have gone to several expensive restaurants that I would have never gone to if I didn’t have a bucket list. I’m usually a real cheapskate. One of the best times I had was going to an *80’s” concert. I was supposed to go with my half-sister who had to cancel at the last minute due to an emergency. I called the son of my best friend (who had passed away from gallbladder cancer just a few short weeks after my pancreatic surgery) to give him the tickets, but instead he offered to go with me, and we had a great time!
TERESA: Do you have a favorite quote, life motto or personal mantra?
@mnewland99: Yes, really simple ones:
“When life gives you lemons, make lemonade” and “Keep the faith.”
TERESA: What do you appreciate the most in your friends?
@mnewland99: How they expect nothing from me and just want to support me. They make me laugh and help me forget about having cancer. They don’t ask me about my prognosis, which is a question I don’t directly ask my health care providers. I do let them know how much I appreciate and love them and treat them to lunch occasionally or they treat me, or we all go dutch. I have one very good friend that sends a prayer picture and good wishes every single day! Another friend I talk to almost every day even though she moved to Idaho a few years ago. I worked at my last job for almost 30 years and retired from that agency 8 years ago and I value the friendships I developed there so much. My best friend since high school passed away from gallbladder cancer 3 weeks after my surgery and due to complications I wasn’t able to visit her in the hospital during her last days or attend her funeral in person. However, her son and daughter are so devoted to me that I feel like I still have contact with her. There are others praying for me, as well and I believe more than anything that prayer is helping me keep strong.
TERESA: What food can you simply not resist?
@mnewland99: Frozen yogurt! A mixture of chocolate and plain tart with a scoop of almonds, always!
TERESA: If Hollywood made a movie about your life, who would you like to see cast as you?
@mnewland99: I have no idea, but a female version of Gregory Peck would be ideal. In 7th or 8th grade I saw the movie to Kill A Mockingbird and fell in love with the role Gregory Peck played. I think he portrayed the characteristic of integrity well in that film. I’ve tried to live my life like that as much as I can.
TERESA: What do you love about where you live or vacation?
@mnewland99: I live near the beach and was lucky enough when I was in college to also live near the beach. Looking out at the beautiful blue ocean is so calming and peaceful for me. On the last day of my 5-FU chemo session last year I drove down Pacific Coast Highway and played rock music real loud with my window rolled down and my arm out to feel the ocean breeze and yelled out a victory call! Corny, I know, but it was fun. I didn’t care who heard or saw me.
Member Spotlights feature interviews with fellow Mayo Clinic Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
Hello @mnewland99 and thank you for the opportunity to interview you for this Mayo Connect Spotlight. I so appreciate your willingness to share your story of pancreatic cancer with others. I especially appreciate the way you share and encourage others who are travelling on the journey with you as they deal with pancreatic cancer.
Your kind support of others is what makes Mayo Connect such a special place! Thanks for being here.
Thank you so much for considering me. I considered it an honor and am so thankful for this MayoClinic Connect forum. Plus it was fun!
Thank you for the support you give to all of us Teresa!
@mnewland99 I so enjoyed your story! It was definitely upbeat! I haven’t had the joy of following your story since I’m always in the autoimmune and caregivers groups. Mayo Clinic Connect has certainly attracted so many people, all with their own story, but so willing to help others!
Thank you for your story! Becky. @becsbuddy
Yes it’s a fantastic forum and thank you to you and all of the volunteers who have provided us this space!
@mnewland99 You have really summed up why Mayo Clinic Connect is a valuable website for all of us. When I recommend Connect to others they might tell me they found a group on Facebook. I stumbled on Connect after I was diagnosed with endometrial cancer and quickly found the members here to be knowledable and oh, so empathic.
I have an image of you flying down PCH playing loud rock music. I grew up in the area where you live and although I’m sure it’s changed a lot the ocean, the sand, and especially the smell of the salt air hasn’t changed. I remember the first time I stood on the south shore of Lake Superior, a lake you cannot see across. And I kept wondering why I didn’t smell the salt air.
You are surrounded by loving family and friends. Thank you for an inspiring interview.
@naturegirl5
Thank you for your comments! I do love Huntington Beach but grew up more inland Orange County. How lucky you were to grow up in this area!
Best of luck!
@mnewland99 I spent many beach days in Huntington Beach. I have wonderful memories of that time in my life. Best to you.
Welcome! The Pacific is so beautiful. Usually I'm living in New Mexico but currently am on a month long trip in California with some coast--Mendocino south to San Francisco. I like that your bucket list had some attainable meals on it! This trip itself isn't exactly a bucket list but more of a spree--over 2 years ago my breast cancer prognosis was two years. A lifetime ago I lived in the Bay Area. A thrill to just smell that California air--it always smells of possibility. Glad you are here on Connect with us.
Hi @mnewland99 - Thank you for sharing your story and so very glad you found the information you needed to get the right treatment….so very fortunate! You have beautifully described the experience of joining MCC and the surprising online friend connections that can be found in this forum.
I also joined MCC only because my doctor recommended I watch an educational video on a procedure that I was supposed to have to treat my blood cancer. I never imagined that MCC would become such a daily inspirational and educational experience for me. I too have had some amazing people reach out and offer support and encouragement and feel so supported by this community.
You are now one more inspirational person I have encountered. Sending you support and well wishes for a good healing journey. Thank you again for sharing with us all. 🙏🙏🙏