My life right now feels like one continuous loop of news. I wake up to it and it lulls me to sleep. I am glued to each and every press conference, hanging on the words of the experts, and obsessively checking social media and news sites for any updates. Even when it’s off, it’s always there with alerts on my phone or texts from my news obsessed friends (you know who you are!). I keep thinking there’s going to be some nugget of information that will shift us back to normal, but there is no “normal” anymore — just the “new normal.”
The “new normal” is not new to me. I have heard it over and over as I have learned to manage with living with cancer. All the feelings that I, along with many of you, am experiencing right now are very familiar. Fear, loneliness, isolation, uncertainty — I have lived through this before. In fact, I have never felt more prepared to face this type of crisis.
When I tell you that it is possible to see some light in your life and that there is hope, I truly mean it. As I faced the unthinkable in my own life, there were certain things that kept me going. I thought maybe you could all use some tips from a pro like me.
- Just Do It: People have always remarked at my strength and resilience. I was also told how they “could never do” what I do. That’s nice and all, but entirely untrue. You can do it! You are doing it! You are getting up every day and facing the most uncertain times of our lives (minus those of you who lived through the Great Depression). We are all doing our best to make it work. Keep going!
- Be Kind to Yourself: We all want to be tough and strong for the people who love us, but, in my experience, that is ex-haust-ing! So many of us are balancing working from home with caring for our families (including those of you juggling work and home schooling). Remember, it’s ok to take a break and have a moment of self-pity. Yes, this sucks. If you need to cry or scream or whatever you need to do to vent, go right ahead. Just don’t sit there too long.
- A Problem is an Opportunity in Work Clothes (credit to the late Gary Kent): Now is the time to do all those things you wanted to do — read the books on your bedside table, pick up that knitting project, train for a 5K, clean out your spare room, make that playlist. Whatever you’ve been yearning to do, minus skydiving, take advantage of this opportunity. While I was sick, I sewed like a madwoman, I baked like I was Ina Garten, and I started writing this blog. Embrace the time.
- Stay Connected: When I was at my lowest points, it was the connections with friends and family that saved my sanity. Texts, calls, emails, anything that reminded me I was still human. Today, it’s morning coffee on FaceTime with a dear friend, video chats with my folks, and virtual happy hours on Zoom. Even seeing colleagues and students on Google Hangouts helps me remember life is filled with more joy than fear and loneliness. I am part of a community larger than myself.
- Rely on Others: In the past, I had to rely on others because I had no choice, but I am terrible about asking for help these days. I was reminded today, however, to let go of my pride and ask for what I need. Because of my compromised immune system (Note: I am not more susceptible than anyone else to get the virus, I am just less likely to have the ability to easily fight it off), I have to be extra careful. This often means I cannot go to the store to get the things I need. I need to rely on the kindness of others in my life.
- Family: Keep your family, and friends who are like family, close. You all know how strong my family connections are, and they are even more so in times of crisis. These vital relationships are everything to me and are the light in my darkness.
For all of us, we have to mourn the old normal and embrace our “new normal.” For me, I need to quiet those voices in the media telling me it’s only going to get worse. I need to focus on what’s in front of me while still thinking towards the future. And, I need to take my own advice. As Martin Luther King, Jr. said, we are all one “beloved community,” and we are in this together.
March 27, 2020 at 1:01 pm
As usual Lisa, you are the best. I am working from home, my eyes are blurry from way too much computer and other devices time, and you remind me of what’s important.
March 28, 2020 at 2:29 pm
You’re amazing Lisa — You with all that you have been and going through inspiring us . Love you Lisa!
March 29, 2020 at 5:50 am
Beautiful, Lisa! My mom shared with all of us. 💜
July 5, 2020 at 10:45 am
I just ran across an article about you on medpagetoday. Immunotherapy super responders and what life is like “not exactly cured”. That is me too! I’m a melanoma survivor. Diagnosed in April 2013 at stage IV (Md4… according to my oncologist “the worst possible”). It was in my brain and lungs. Keytruda was not available in trials for patients with “uncontrolled brain metastases”, and my brain cropped them up like popcorn. Soooooo… surgeries, radiation, research meds… got me through to FDA approval in the Fall of 2014. My response was swift and was also effective in the brain, which is not the case for many. Infusions every 3 weeks from Nov 11, 2014 until July 5, 2016. I had the same side effects as you… fatigue and gastrointestinal issues. My thyroid dipped on Yervoy, and then further dipped on Keytruda, but that seems an easily controlled thing. It wasn’t until around infusion 24, that I began to have additional “late onset issues” with polyarthritis and pancreatitis. I made it through infusion 29 before my doctors decided it was time to “take a break”. We never discussed it being “finished”. It just kind of happened that way. The “break” continues to this day, as I have not had any recurrence. So, I am off treatment, seemingly “cured”, with CT scans moved out to 9 months and brain MRI’s at 6 month intervals. My dad passed away from mesothelioma in 2010. He had endured early stage melanoma and prostate cancer in the two decades prior to his passing. My mother died in 2006 from colon cancer. Neither of my siblings have cancer of any kind, but I do wonder if I was “gifted” a mismatch repair gene. Genetic testing has not been done. I also wonder when the next shoe will drop. Every scan, every headache, every cramp, every “cyst” (ovarian and pancreatic), every inexplicable day of exhaustion… etc. It’s strange to be both so completely “normal” and healthy, yet also question just how normal and healthy I really am. After reading the medpage article, I couldn’t help but think that there must be more of us out there. I am on a couple of melanoma forums on FB, but even there, the responders are all varied levels of reponse, treatment duration, and side effects.
December 8, 2020 at 12:06 pm
Hi Niki! My apologize for the delayed response. Thank you for sharing your story. There are definitely more of us out there. Would love to connect…you can reach me at firstname.lastname@example.org.
October 22, 2020 at 8:16 pm
Hi Lisa I have just read the MedPage Today article on your story- I am like you, and would like to connect if you are up to that idea. https://steveholmes.net.au/
December 8, 2020 at 12:04 pm
Hi Steve, My apologies for the delay in responding to your post. Thank you for reaching out. I am very interested in connecting and can be reached at email@example.com. I look forward to connecting!