Rose Kaiser

Today I celebrate 17 years surviving lung cancer. COVID is a nightmare. But, I am celebrating nevertheless. Life after lung cancer is precious and most worthy of celebration.
You might note I’ve run out of toes to paint. I do this to honor Phillip Berman, MD, a radiologist with Stage IV lung cancer, who was instrumental in my survival. Phil resolved to paint a toenail red for each year he survived “this madness.” He painted 5 before passing; I continue the tradition using LUNGevity Blue. My reason is: if I can live, so can you.
Stay the course.

In a peculiar way, my cancer treatment and all has sort of gotten lost in the coronavirus talk. With so many changes to our regular lifestyle occurring on a daily basis, it feels as if nothing else matters. Granted, one's health is the most important consideration, but now the talk is about everybody's health. Nevertheless, how do I throw caution to the wind and interact with my environment when doing so might endanger the very stability I've worked over 11 years to maintain? I mean, I have to live my life, but will there be a cost to do so? I realize that the good of the many outweigh the good of the few but Spock was speaking from outer space. How do I, while in and out of treatment down here on Earth not worry about myself?
I realize life will go on for almost all of us, but will there be consequences for those unable to secure proper care? Will decisions be made about allocating resources because demand has far outstripped supply? How does life for cancer patients undergoing treatment fit into this new paradigm where so many people might need some kind of medical care? Will there even be enough health care professionals to administer the kind of life-sustaining treatment many of us seriously-diagnosed patients have come to expect and need?
Unfortunately, only time will tell, and there may very well be little of it in the interim, during which we can anticipate and plan accordingly. So many decisions will likely be made by the powers that be that might not exactly consider my set of cancer circumstances. In a way, I might be collateral damage. There simply might not be enough room and medicine and staff and all to accommodate my needs. It's nothing personal. It's just business, or rather the lack thereof. With so much of the world's population affected while going about their usual and customary routine, who, what, where and how will there be any prioritization? Moreover, what about people who are already sick and challenged by a weakened immune system (like yours truly), will the competition from newly diagnosed coronavirus patients overwhelm our health care system?
I can't assume that life will go on as it always has. That would seem to be incredibly naive. I need to proactively make the necessary arrangements and/or contingency plans. I can't presume that being a cancer patient will always get me through the door. I'd like to think I take priority. But it might not be about priority, it might be about availability and a dwindling supply not able to keep up with demand.
Still, going down this rabbit hole of fear, anxiety and worry doesn't help either. As I have since the date of original diagnosis, back in late February, 2009, I need to make the best of a bad/challenging situation. I need to roll with the punches and be prepared for any eventuality and take the good with the bad and vice versa. Normal left the building a long time ago for me. The problem is that building to which I metaphorically refer is the very building where I get my ongoing medical treatment. And though I don't anticipate being kept away from that building, the reality is that it's out of my control.
As with anticipating the results of CT scans and lab results, all in good time, or bad. I need to keep the same positive attitude as I always have because though I might be at greater risk than many of you regular readers, we are all at risk, apparently. As such, if there is indeed anything to be gained by so many people being so similarly affected, the reality is that there are strength in those numbers and even though it may feel that right now the whole world is upside down, things eventually will right themselves. They always do. I just hope I'm still smiling when the dust settles.

I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful.
I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home.
The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing.  We made even more friends and keep in touch all year long through social media and other events around the country.
Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit.
LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve.
The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand.
When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
 

My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!