September is Blood Cancer Awareness Month, and I am a leukemia survivor, so this topic has come up more than once during our recent family dinners. Dinner Table Doctor and I had a long discussion the other night about the valuable lessons we have learned from my leukemia diagnosis. We were alone, which happens a lot lately since our son is back at Ohio State and our daughters always seem to have somewhere better to be, even during a pandemic. Our dinner included a delicious meatloaf and a lovely bottle of Shiraz. I have a secret ingredient which will elevate your meatloaf to the next level. I’ll share this at the end, so keep reading!
Lesson #1 – Give people the benefit of the doubt. When I was diagnosed, I was 39 years old and my kids were 8, 4, and 2 years old. I was stunned and depressed and nervous and worried but I didn’t look sick at all, so no one would know what I was going through just by looking at me. It made me wonder what everyone else I encountered was dealing with. If a cashier was rude to me or a driver cut me off, I couldn’t stay angry, because they might be dealing with catastrophic events and just trying to get through their day without going insane. DTD also became much more aware of the pain and depression and grief and worry his patients and their families might be experiencing when waiting for test results or to get an appointment with a specialist.
#2 – Not everything you read on the internet is true. I was diagnosed with chronic myelogenous leukemia (CML). In medical school, DTD learned that this type of leukemia was typically a deadly diagnosis. When I researched CML on the internet, none of the information was hopeful in any way. I read that life expectancy was 3-5 years without a bone marrow transplant. We had three young children. Imagine our surprise when my oncologist told me about a new treatment which involved taking a pill called Gleevec once a day. If my blood counts normalized, I would not need a transplant and could go on with life! The articles I was reading online were just a few years old, but the information had not been updated to reflect this breakthrough treatment, which brings me to our next lesson:
#3 – Science is amazing! CML was one of the most deadly types of cancers, and now it’s one of the most treatable. This is all thanks to new developments in blood cancer research, and now the types of medicines used to fight CML are used to fight all sorts of cancers. New strides are being made every year because of the wonderful scientists and researchers in our world. Unfortunately, not everyone benefits from this research, which brings me to the next lesson:
#4 – Access to healthcare is an important issue in the U.S. No matter what side of the political spectrum you are on, you must realize that our healthcare system is broken. My life-saving medication would have cost about $3,000 a month without insurance. Within ten years the price went up to $11,000 a month without insurance. There are people in our country who will die because they can’t afford a medication or treatment that would save them. Thankfully I have insurance, but each year I depleted my $4,000 deductible the first time I refilled my prescription. People who work full-time jobs and have savings often lose everything as a result of one catastrophic health diagnosis. DTD has had patients with insurance decide against getting a needed MRI or going to the hospital out of fear of medical bills. This is why DTD and I are strong advocates for some type of universal healthcare in the U.S., which brings me to the next lesson.
#5 – You can’t sit on the sidelines. Life is all about connecting with people and being a part of society. You have to get involved in one or more causes that are important to you. Be vocal, be active, and make a difference in some small way. You’ll feel better and you’ll meet some wonderful new friends along the way.
#6 – Ask and you shall receive – but you have to ask. If you are facing a health crisis, physical or mental, people want to help you. Your friends and family and even strangers through faith-based organizations and non-profit organizations such as the Leukemia and Lymphoma Society are willing to help you. They might not know what you’re going through or they might not know exactly how to help you. You have to be open with them and ask for assistance, whether it be for a ride to the doctor or some home-cooked meals or babysitting or laundry services. I am very lucky in that many friends and family were there for me, and my parents even dropped everything, sold their house and bought the house across the street from us. I haven’t paid for a babysitter since, and I have had many a meal delivered and a personal shopper whenever I needed something!
#7- The human spirit is amazing. On my many visits to the oncology center, I have seen people obviously battling horrific diseases. The waiting room made me so depressed at first, but after several visits, I began to see the resilience of human nature and the love and kindness of strangers. Most people are truly kind-hearted. Most people will somehow find the strength to deal with their own suffering or the pain of someone they love, and most people will try to ease the suffering of another human being.
#8- Miracles can happen! I was told I would have to take this medication for my entire life. Then a few studies were published citing the success stories of people who stopped treatment but were still cancer free. Sadly, the examples came from patients who could no longer afford the drug or from the inability to tolerate the side effects. So, after 9 years on Gleevec, I took a chance and stopped treatment. That was 3 years ago and I have been cancer free. I still have regular bloodwork, but so far so good. This means Gleevec is a possible cure for CML. Amazing!
Who knew that so many valuable lessons could come from a cancer diagnosis? Not me, and not even DTD, but we realized while enjoying our meatloaf and Shiraz, that we are better people as a result of leukemia. Speaking of meatloaf, the secret ingredient is soy sauce! Add several squirts of soy sauce to your mix and I promise you the loaf will be ten times more fabulous and you will get many compliments.
I’m sure you have had challenges to overcome and lessons learned along the way, so feel free to share in the comments.