By Cyndi Myers
Being diagnosed with leukemia was the easy part…
45. I was in the “prime” of my life. I had 3 thriving young kids, a loving husband, the perfect job that left me with ample time to be present with my kids, and I was fit and seemingly very healthy...until I wasn’t. Increasingly exhausted, covered in a skin rash, experiencing heart palpitations that made me feel like I was either rapidly aging or in the throes of a heart attack, I decided it was time for a visit with my doctor. After an EKG revealed my heart was in tip top shape, I was sent for blood work.
Leukemia. Acute Lymphoblastic Leukemia (ALL) to be exact. Not commonly found in adults, ALL is a fast-growing blood cancer where white blood cells rapidly overproduce in your bone marrow and are sent out to your bloodstream where they wreak havoc, overcrowding the oxygen and nutrient-delivering red blood cells. Deprived of oxygen and essential nutrients, your body experiences severe exhaustion, easy bruising, heart palpitations, changing blood pressure and a host of other symptoms. I was to quickly pack my bags for a 4-week stay at the hospital where I would begin my 2 ½ year journey with leukemia. What was in front of me now was not the kids’ talent shows or the soccer tournaments or weekend baseball games where I would leisurely sit and chat with the other parents, cheering on our young athletes. No, I had to about-face, take the left fork in the road and climb the steep rock face that was now in front of me. Chemotherapy, radiation, steroids and a frequent battery of tests were what my leisure time would consist of for the next 2 ½ years. My idyllic life came to a sudden, screeching halt.
Little did I know, that 2 ½ years would be the easiest part of this new journey I was on.
I am blessed to be in remission now, and crossed that 5 year mark just this year. One of the lucky ones, I realize, who made it to the other side of the churning, bubbly, rapid white water river called Cancer Treatment. And with great fanfare, I was sent off from my last chemo treatment with a band of smiling, clapping, waving nurses. I would now see them only once a month when I had a check up with my oncologist.
Finished. Finire. Terminar. DONE. But WAS I?? Most would cheer loudly at the “finish line”. In fact, I did. My family did. My friends did. What I didn’t realize was that the real hard part was just beginning (cue evil laugh).
Recovery. I made it. While I was thrilled to be done with treatment, what would recovery look like? At the time, I didn’t think much about it. After all, I’d survived cancer. I’d survived the long, arduous treatment. Smooth sailing from here, right?? Uh, hold on a minute, there, missy!
You see, with cancer treatment there’s another side. Another chapter to the story. Another bridge to cross, this one even longer than the one before. How do I right my body after being brutalized by chemicals for so long? At the time, I had no idea I even HAD TO right my body. But I did, and STILL am. No one tells you this. I’m not even sure the medical community understands this. Even if they do understand, it’s next to impossible to navigate the healthcare system to figure out where to begin. Our healthcare system here in the U.S. has, over time, become so compartmentalized that - in my opinion - it’s almost nonfunctional. ALMOST.
On the one hand, I had tremendous care. I beat cancer, afterall. I LOVE my oncologist. She is not only an incredible physician, she has been my rock throughout my entire journey, even 5 years later. Everyone from the nurses to the phlebotomists to the ER staff and even the janitorial and food service staff I interacted with along the way has been equally amazing. Everyone has done their jobs marvelously.
On the OTHER hand, things get tricky when you’re no longer following the treatment protocol, the guidelines. Your symptoms are no longer found on the “list” of what an oncologist/hematologist does. So, what happens when, in recovery, you encounter issues such as digestive distress or persistent neuropathy or unexpected and inexplicable weight gain (to name just a few!)? The Oncology Department refers you to the Endocrinology Department who refers you to the Gastroenterology Department, and so on. And, rightly so. I wouldn’t expect my oncologist to fully understand the digestive system or the endocrine system. I understand the need for specialization; the more a physician knows about their particular area, the better care you will receive. But in this quest for answers, there’s a catch. You circle and circle and circle, and in the end come away with no answers because the oncologist who was able to put you into remission from cancer only really knows how to do THAT. And the endocrinologist only knows how your glands function, not why you have digestive distress. And the gastroenterologist only knows that he or she doesn’t SEE any reason for your distress on the other end of the scope, never mind that your body can’t process even the simplest of foods.
It seems ironic that as we advance technologically, our health care system continues to further compartmentalize care. While necessary in one sense, this structure almost removes the ability to look at medicine HOLISTICALLY, inherently creating a system full of gaps in care. Even if a practitioner understands this (like my oncologist does), navigating the system as a whole yields the same results for them as it does for the patient. And this is a very real problem.
Holistic medicine is a form of healing that considers the whole person - body, mind, spirit, and emotions - in the quest for optimal health and wellness. As the song says, “The leg bone’s connected to the knee bone, the knee bone’s connected to the thigh bone, the thigh bone’s connected to the hip bone…”. This should also be true for hospitals and healthcare systems. Everything is connected, and the system cannot function effectively if they are not.
Another example of extreme compartmentalization at the expense of the patient is when I recently had my knee replaced. I have injured the same knee several times over the course of 35 years, beginning in my freshman year of high school (please don’t do the math!). A couple of soccer injuries and a skiing injury left my knee in pretty rough shape. I waited over 25 years to be “old enough” to have a knee replacement, building up the muscles surrounding my knee to support it in the meantime. Sadly, all that work went out the window when I was in treatment for leukemia, as I was not allowed to continue working out so as not to endanger my very compromised immune system. My entire body atrophied and I was left with a very broken knee that desperately needed replaced. At the recommendation of a number of people I trusted, I sought out who I was told was the best orthopedic surgeon in the area, and had the surgery. A few months post op, I began to have pain on the inside of my knee. It gradually worsened to the point of not being able to straighten my leg at all. My surgeon was “baffled” (his words exactly). He repeatedly referred to my post op x-ray image, declaring it a perfect success. It was SO successful, he claimed, that he would go so far as to present it as such at any gathering of orthopedic physicians. Yet, I was in an incredible amount of pain and my knee didn’t even function! Long story short, a massage therapist I happened to connect with ended up figuring out that it was my sartorius muscle (the longest muscle of your body that attaches at the inside of your knee and runs across your thigh to connect at the front of your hip) that was jammed up at my hip, shortening the muscle and pulling at the other end of it...at the inside of my knee. Why couldn’t the best orthopedic knee surgeon in the area figure this out? Why didn’t he know what other body parts connected to that point in my knee, the source of my pain and dysfunction? At what point did his medical practice become so compartmentalized that he could focus only on the piece of metal he so carefully and skillfully inserted into my body? And, more importantly, how do we, as consumers of healthcare in this country, navigate this compartmentalization, the giant gaps in continuity of care to find solutions to our needs?
This question lies at the very heart of why my sister and I have created this website. We want to help YOU, a consumer of health services, a person in search of answers you’re not currently getting from your own providers, to maneuver through the white water rapids YOU’RE facing on your own health and wellness journey. So, how do we all move forward?
5 Tips To Finding Answers To Your Health Concerns
NEVER GIVE UP! Probably the most important piece of advice we can give to you. If you know in your heart of hearts that something is not right with your body, keep advocating for yourself. The answers are out there - and may be found in the most unlikely of places - so don’t stop searching!
Don’t be afraid to talk about your health concerns with others! I’m not one to share my health struggles with the world; I tend to keep my personal issues close to the vest. But what I’m realizing now is that you learn about different options and possible solutions when you share your story with others, especially with others who are going through the same or similar struggles. I’m finally feeling like I’m on the right track to healing my digestive issues only because I found a practitioner through talking to someone who has been going through very similar health struggles.
Be open to exploring alternative medicine. While not usually covered by most insurance plans, alternative medical providers tend to approach medical care more holistically. What I have also found is that they also like to focus on getting to the root of the problem, rather than simply addressing the symptoms. My gastroenterologist, for instance, always ends up prescribing omeprazole for my digestive problems. While that may be good for immediate, temporary relief, many studies have shown that long-term use of proton pump inhibitors (omeprazole) can cause decreased calcium absorption, which in turn can lead to “an increased risk of osteoporosis and decreased bone mineral density, with a 35% increased risk of fractures.”* I know I want my medical provider to be able to think outside the box and diagnose the root cause of MY digestive problems to avoid the possibility of me experiencing added health issues as a result of being prescribed the “usual” course of care.
Write down your questions and/or concerns before you go to your healthcare provider. Before I went to my primary care physician at the outset of my journey, I wrote in my Notes on my phone the symptoms I was experiencing. This helped me to provide my doctor with the most information to enable her to make the most accurate diagnosis.
Assert yourself (calmly and politely, of course!) to get the support or information you need. Speak up if you don’t agree with your healthcare provider. You are the boss of your own healthcare; no one knows your body better than you do!
Our goal here at Transcend Mind & Body Wellness is to provide you a forum for the most accurate, up-to-date information, tips and services for whole body health and wellness. Together, our life experiences have culminated in creating this space where people like you can find answers to questions pertaining to their health and wellness, as well as connect with others who’ve had similar experiences.
Through mind-body coaching, nutrition and healing services you will transcend wellness, and move toward wholeness. GROW beyond your limits!