Originally Posted: 5/18/2011
Being an empowered family requires that you assembly a team of allies who will support you. Advocacy can only take you so far if you don’t have supporters on your medical team. My Dad went from being the healthiest guy I knew to having cancer in a moment. Being faced with such a life changing diagnosis is overwhelming, and it is tempting to take the easiest route and stick with the diagnosing physician. But with cancer, and especially Multiple Myeloma, which is more like a chronic disease, a good relationship with your oncologist is essential.
My Dad was at first resistant to this. Even though none of us got a good vibe from the first oncologist we worked with, my Dad wanted to stick it out. “It’s closer to home, it will be easier for your mother,” was his rationale. But even his primary care doctor strongly suggested at least seeing someone else for a second opinion, so my Dad agreed.
I remember asking the first oncologist we worked with questions about the treatment options for Multiple Myeloma and his response was, “What are you, a nurse or something?” It was rude and condescending. We didn’t care for his attitude, so we went for that second opinion and found my Dad’s current oncologist, who is the warmest, most genuine and caring person you could meet (not to mention one of the leading experts on Multiple Myeloma). He was thrilled to hear that I was a nurse, and one of the things I love about him is how he always discusses treatment rationale with me in “medical terms” and then is able to explain everything to my Dad in a way he can understand as well. I have to be honest, there are times that I have NO idea what he is talking about and have to come home and do some serious reading, but I love that he treats me as an equal partner in my Dad’s care. On our first visit, my Mom and I knew right away that he was the person to choose for our team. My Dad needed some convincing, but by the time we got to the stem cell harvest, he knew he was in the right place. “When I was first diagnosed, I just wanted to get the treatment done and get on with things,” he told me, after the second day of harvesting cells. “But now I realize how foolish that would have been.”
One of the things we love most about my Dad’s oncologist is his ability to tailor the treatment plan for each individual patient. While the first oncologist gave his a formula (we’ll do 12 weeks of RVD chemo, harvest enough stem cells for 1 or 2 transplants, do the auto stem cell, and you’ll be good as new), my Dad’s oncologist gave us options. We can try this drug or that one, but if that doesn’t work, we can do something else. I remember asking him how many transplants he harvested for and he told me enthusiastically, “Four, Five, Six- as many cells as we can get! They all get destroyed in the transplant process so we better take them while we can!” When my Dad was hospitalized with more spinal fractures last fall, he switched the steroid in his regimen from Decadron to Solumedrol. My Dad was initially wary- it wasn’t following the “protocol.” But upon further explanation, we understood. Because of the fractures, Dad’s onc thought Solumedrol was a better option.
When Dad was transferred to the ICU, he still stopped by every day to see him, even though he was not on service. The oncology team would be there in the morning, and Dad’s oncologist would stop by every night on his way home from clinic. Always with a big hug for my Mom and me, and always willing to try something new to help my Dad. I will never forget the day that my Dad was very sick in the ICU, spiking high fevers every night. His oncologist came over mid-day to tell me about a new drug he wanted to try, Enbrel, which is generally used for autoimmune conditions like rheumetoid arthritis. He had the ICU team rolling their eyes at him (according to the ICU, he is too “creative” in his approach), but at this point, my Dad was so sick that we were willing to try anything. “I couldn’t wait to tell you about this because I knew you’d be excited,” he told me, as he proceeded to explain something about immune modulators that was way over my head. But I understood the basic principle and most of all, I loved that he was so excited to include me in my Dad’s treatment plan.
One Saturday morning in March, I arrived at the hospital to have a quick visit with Dad before going to our hotel room to sleep before work again that evening. While I was there, the ICU team came in to round. I was not particularly thrilled to see them. The doctor on service, who I referred to as “Dr. Doom and Gloom,” seemed to have it out for my Dad. On the fourth day in the ICU he came in and told my mother, “You know he’s going to die, right?” Needless to say, his bedside manner left much to be desired and I preferred to wait until after rounds and speak to the ICU Fellow on my own. But on this day, I was already in the room, so I stayed to listen. At this point, my Dad was trached and still on high ventilator settings, but otherwise seemed to be slowly improving. He was coming off sedation, all his other organs were fine. It seemed like it was just a wait and see game.
As the team was about to leave, Dr. Doom and Gloom turned to his intern. “Have you reviewed this man’s PET scan?,” he asked her. “Because the amount of metastatic disease he has is impressive. As you know, he only had an autologus transplant. I do not know how an auto transplant could begin to touch the amount of disease he has. The oncologist seems to think he has a life expectancy of 10-15 years or more, but I just don’t see it. So, I’m just not sure what we’re doing here.”
I’m sitting in the corner, speechless. We had been told all alone that my Dad had Stage I Low Risk Disease. The transplant would most likely put him in complete remission. And, on the first day after he was transferred to ICU, his labs came back showing remission. Plus, everyone knows that PET scans aren’t used to stage myeloma. Its a cancer of your plasma cells in your BLOOD and BONE MARROW, so of course the PET scan is going to light up everywhere. The only reason he had a PET scan was to have something to compare it to after the transplant. In his oncologist’s experience, it can sometimes be useful to find a slight bit of residual disease, even when the labs and bone marrow biopsy come back clean, and can be an indication for different maintenance or a second transplant.
Well, Dr. Doom and Gloom clearly did not know he was dealing with an empowered family member. I immediately found my Dad’s cell phone and got his oncologist’s personal cell phone number. And I called him, at 8am on a Saturday morning. Dad’s oncologist was appalled to hear what had happened. He told me to immediately email him detailing what had happened, and he would be contacting the head of physicians with the information. He never once doubted me or questioned my credibility. As he said, Dr. Doom and Gloom does not have the right to destroy the trust of a patient’s family with their oncologist. He suggested we also file a complaint with the manager of the unit, which I did.
Turns out, this was not the first time this has happened. This doctor is known for saying inappropriate things in front of family members, but no one has ever stood up to him before. The staff brushed it off- “He’s the attending- what can we do about it?” We met other families on the unit who had had eerily similar experiences with him, but none had been sure the appropriate way to handle the situation. Thankfully for us, we trusted that my Dad’s oncologist would step up to the plate for us.
Everyone has a choice of healthcare providers. To become an empowered family, you have to have at least one member of your healthcare team who you trust and feel comfortable with. A member of your team who helps you feel empowered. That team player can make the difference between life and death, and we believe that is what my Dad’s oncologist did. There were other team members who played a role in his recovery, but having a primary doctor that has believes in you and has your best interest in mind, and who you trust will help you make the best decisions is invaluable.