Being Your Own Doctor…Advocate….Researcher
Written By: Valerie Mitchell, Ms. May
With all the best intentions, sometimes doctors get it wrong. When I was diagnosed with HER2+ Stage 2B breast cancer in April of 2016, I had a mammogram just 4 months early that was “all clear.” Unfortunately, the doctor mis-interpreted what she saw as a cyst, instead of cancer. I found the lump in my armpit when exercising. As I started chemotherapy, there were glitches. The center didn’t realize I was scheduled for that day and they scrambled to get my meds ready, blaming it on a new electronic medical system. When I called to inquire about getting the Neulasta shot the following day, I was told that the insurance company denied it. Calling the insurance company, they said the doctor’s office never ordered it. Both blamed the other one. I didn’t get the shot and ended up in the hospital with neutropenia 1 week later. I got a new oncologist.
As surgery decisions approached, my mom insisted that I get a second opinion. It was uncomfortable, but I did and found that it really wasn’t so bad. The second doctor commended me for taking my health seriously and getting all the input that I could. He agreed with the original surgical plan, so I felt pretty good about my decision. When seeking radiation, again I visited with two different doctors to see which one was a better fit. For reconstruction surgery, I interviewed two doctors as well. I got comfortable asking tough questions, expressing my preferences, and getting additional input when needed. I respected the doctor’s medical experience and training, but also knew that it was my body, and ultimately, I need to make the best decisions for myself and stay on top of things.
As treatment wrapped up, about a year after I was diagnosed, I wondered what to do next to prevent the cancer from coming back. I was HER2+ and there was no medication, at the time, to take post active treatment. I asked my oncologist and she said “good diet, healthy weight, don’t smoke, exercise, limit alcohol.” I thought “I was doing that when I got cancer.”
About two months later, I came across a post on the Here for the Girls website about a newly approved medication to prevent recurrence in HER2+ breast cancer. I was excited, as finally there was more that I could do. I approached my oncologist and she said “no.” I was confused. She said the diarrhea was too risky on this medication. Now mind you, she saw me on the heavy-duty chemo where I had a lot worse than diarrhea. I wanted to at least try it. I waited a few weeks and approached her again. She remained firm in her decision.
I got another opinion. The new oncologist reviewed the literature I took to her and agreed to give it a try. I was her first patient on the new medication. We navigated the journey together. Yes, there was diarrhea, but I made the full year of treatment on Nerlynx. Having taken this extra step gave me peace of mind.
I learned to advocate for myself, have the courage to seek second opinions, and monitor for new developments. These skills would become essential shortly.
We had about two good years following the end of all of the cancer treatment before COVID shut down the world in 2020. Unfortunately, my family got COVID very early in the pandemic. My husband was the first to have symptoms, beginning March 15, 2020, with the rest of us following shortly after. Fortunately for us, we didn’t require hospitalization. My husband developed pneumonia, but was treated at the ER and released. He recovered and went back to work about 2 ½ weeks later.
That’s when things fell apart. Three days after returning to work, he came upstairs where I was working (remember lockdown) and told me that he was having severe chest pain and needed to go to the ER. That kicked-off the next three years of serious symptoms, numerous doctor visits, and no answers. He was a long-hauler. The long-haul symptoms developed over time and affected nearly every system in his body – chest pain; difficulty breathing; strange rashes on his legs, chest and face; daily severe headaches; debilitating fatigue; vision changes that are untreatable; GI issues; sweating episodes; racing heart beat; dropping heart beat; vertigo; difficulty controlling his temperature; heavy legs; difficulty walking and moving his legs; ear pain; geographic tongue; strange taste and smells; the sensation that he had sunburn whenever the sunlight touched his skin; light and noise sensitivity; brain fog to the point that he couldn’t remember the 4 digit code to unlock our front door. I’m sure I am forgetting some. We searched for answers, visiting cardiologists, pulmonologists, optical neurologist, neurologists, hematologists, immunologists, psychologists, infectious disease, dermatologists, and of course, his PCP. He underwent so many tests. At least 200 vials of blood were drawn over the past 3 years. And the maddening part – the majority of tests came back “normal” or with minimal abnormalities, but nothing that would explain the severity of his symptoms. He began to wonder if he was crazy.
What was so hard about this was most doctors didn’t believe him and he was dismissed as having anxiety. Because he was one of the first patients to develop long-term symptoms, the doctors weren’t looking for his issues. They were focused on cough, fever, pneumonia. If it didn’t meet those criteria, then it wasn’t COVID. And they were so sure of themselves. It was infuriating, frustrating, and terrifying. Many nights when I woke up, I laid motionless, listening for his breath; afraid to touch him, if his body happened to be lifeless and cold. I became his care-taker, after he spent a few years being mine. I relentlessly search online for answers. Dr. Google it was, since most of the rest of the medical community could not help. I joined so many Facebook groups for long-COVID. It was the source of solace – at least letting us know that there were thousands of others experiencing many of the same symptoms. We tried different treatments based on what others would find helpful – more supplements that I can count, TENS machine, compression socks, special glasses for his vision, etc. As the years progressed, we would run into some doctors who heard of long-COVID, but he was the first person they actually met with his symptoms. Some of the best doctors would admit up front that they didn’t know how to help us and that we knew more about long-COVID than they did.
The good news is that he is making progress. He is not as symptomatic as the first 6 months. He is probably 70% of his former self – with a lot of modifications. And the best news is a renewed sense of hope. One recent evening I was researching the clinics in South Africa, Germany and Greece – preparing to travel to one of those locations for the treatment that was reported to have the most promising results. I stumbled upon a doctor in Alabama who was doing the same thing at those clinics. He is one of four locations in the USA doing this treatment. The rest, Harvard, Mt. Saini, and the Mayo Clinic are doing the same, but a patient must be enrolled in their clinical trial. The Alabama doctor knew how many people were suffering and put his medical license on the line to do what was needed to give relief, without waiting several more years to see published results. Today is Day 1 of this treatment, which is anticipated to take 4-6 months. We have hope.
I understand that word now – HOPE -so often associated with breast cancer. I reflect on all of the researchers over the years working so hard to find new treatments and eventually a cure. I have a deep sense of gratitude for the treatment of breast cancer that is currently available. I had doctors who identified the issue. There were tests to confirm the diagnosis. There were protocols to treat the disease. Doctors were in agreement about the treatment. The treatment was available in the USA. Not only in the USA, but in my city. I even had multiple treatment centers to choose from. They believed me. I didn’t have to convince them that I had cancer. How lucky was I, to get a disease that is known.
What was the same between my journey and my husband’s, is the support we gained from others walking in our shoes. Whether it be the in-person support groups at Here for the Girls, or the online Facebook groups for long-COVID gathering thousands from the global community, knowing that we weren’t alone was priceless.