Going the Extra Mile

I've learned and gone through so much throughout this journey already, that I often find it hard to sit and articulate my thoughts to their truest form, good or bad. One thing is for certain, I can write endlessly about those that go above and beyond their role as a physician. We aren't talking my friends or family, because they do this every single day. Their awesomeness isn't to be discounted and without them, I wouldn't have the strength to work through this.

What I really mean is when someone takes the time to listen, explain or research literature for you, behind the scenes on your behalf either to advocate or become more informed themselves to assist you that as a patient. When this happens, you feel at ease, comforted and truly cared for. As a physician, I have found that something so simple as making a phone call for your patient to another practitioner or lab when they are in the room can save them a lot of precious time and angst. While it takes us (I'm talking from the other side now) just two-three minutes in our already busy day, it can reduce a great deal of unnecessary distress for the patient.

Take for example the initial pathologist who first received my peripheral flow cytology (as part of my initial labs). As he now states "I had never seen this before" - like most who are currently treating me. CLL is certainly not a disease of the young, it afflicts those over 55 (even that is young and most research stops here) and to have a 34 year old exhibiting cellular signs and features of CLL must have been mind boggling. I first heard about my flow cytology from another physician, that it had been sent to the Mayo Clinic for opinion. That was my first clue something was wrong.

"Please clarify" - you will hear this over and over. I say this "statement" now more than I ever have. Its usually spoken when I just don't believe what is being said to me (emotional undertone), or when I don't understand what is being said to me (logical/factual sense). Same statement, but can be used in many ways.

Even at the time of my initial neck biopsies, prior to my diagnosis, the radiologist couldn't understand what he was seeing as he moved the probe up and down my neck. He said he had never seen this type of leukaemia/lymphoma in someone so young and perhaps it would be to my benefit to contact the pathologist who first viewed my flow cytology (peripheral blood) to gain some clarification. He wasn't convinced as he took multiple biopsies. I wish he had been right.

So, track down the pathologist I did. I walked over to the windowless, old building that houses the pathologist's in the Victoria General. I walked aimlessly, unable to rotate my neck as I tried to look at room numbers. Eventually, I found a secretary and told her my brief story. She called this pathologist on his cell phone and simply handed the receiver to me as he answered. I stammered a bit, but he was very kind. He asked "Are you the 34 year old resident". I told him I was and he agreed to call me when he came to the office later that day. He said this was all very odd.

Over this acute phase he has become an incredible advocate for me in that windowless, yellow walled, microscope filled building. He called me each night over that initial week, just to update me even if he had nothing to say at all. I could tell he really felt for me, he put himself and my shoes and tried to understand what is was he could do. He displayed true empathy, a role we often state pivotal to our profession in our medical school/residency interviews. But, it is incredibly hard to empathize in the most raw, honest form and if often takes going the extra mile.

These daily phone calls meant the world to me at a time I simply existed in my life without knowing what was truly going on. He would track down biopsies taken and have them processed immediately, he would consult other specialists to ensure my diagnosis was indeed correct under the microscope and my tissues were adequately analysed and prepared. He even reviewed a second set of tissue samples to ensure there was no error. There was no error, unfortunately. Its just bad luck.

We hadn't talked much over the past month, since I received my CLL diagnosis. But one week ago, I went to my follow up appointment with hematology (prognosis related) and was told that only one of my molecular markers were available for me. I knew multiple had been ordered. I knew the significance these results would play in my perspective of this disease. I asked "Why? Please clarify. Why they aren't available for me today?" I wasn't given an answer that sat well with me. "Maybe they aren't reported, I am not sure" replied my hematologist. He didn't know, but why didn't he know? I asked if he had taken the time to call pathology, so he could relay accurate information to me as to why they weren't available. He hadn't. He knew the importance of these indicators, after all, I underwent the most painful procedure of my life just to have these available to me. I could tell my two supporters could see the steady stream thoughts on my face portray the disbelief circling my inner consciousness.

Isn't the purpose of a follow up visit to follow up on tests taken on the prior visit? That's always been my understanding as a physician. If you don't have the result and the patient is expecting it - you have many options. Contact the patient prior to the appointment "I'm sorry your result is not ready yet (if this is genuine and true). I will bring you back when they are available if you would like" This gives the anxious patient the option and they know what they are coming into, their expectations are appropriate. You can contact the lab, pathologist or appropriate person for the result at the appointment. Or, you can say you will search for the result and call/email/communicate the result. Its not rocket science.

I can tell you I now truly know the feeling of being let down when you arrive for follow up and are provided incomplete results, without empathy. I knew the molecular markers had been processed. I asked if he had contacted pathology and he hadn't, so I told him I would do it myself. He said we could discuss it at my next appointment in May, that wasn't an option for me. Too far away. Life for me is now, everyday. The data I can have now impacts everything. May is a lifetime away for me.

My mother once told me, if you want to get something done; do it yourself. She was a woman who got things done, she often had no option but to rely on herself as a single parent juggling two girls and a full time job. I knew this was one of those situations. I was going to do it myself, again.

Two nights after my follow up appointment, I emailed the pathologist who I speak of earlier. He immediately emailed me. He would meet me the next day and discuss any results I requested. Away I went to his office that day, not knowing what information I may receive. But I was ok with that, those were my expectations.

He asked if I wanted to look under the microscope at my tissues and cells. I didn't know if I was ready to see the cancer in its truest form, but I thought perhaps it would provide some context to the disease. I looked and stared, I couldn't take my eyes off the mature, purple cells that populated the slide. There were a lot of those cells, more than I thought I would see. I'm glad I looked at the representation of my cancer, it was information I think helped to clarify things for me, once more.

We went over multiple slides, as many as I wanted to see. He talked through my neck biopsies, bone marrow biopsy and aspirate and flow cytology. He had research papers on his computer screens (yes there was more than one) and he had printed off relevant research to help him understand the molecular basis for this disease. He went so far as to read old school textbooks and new world literature, pull out extra molecular markers that would help provide me a more accurate prognosis and then performed the added testing for me, without me even knowing. How incredible is this pathologist? For most in this profession (my friends for certain) they choose this speciality because they don't have a 'fond affiliation' for patients and choose to work in solitude. I can't say the same for this physician, who has become most certainly one of my greatest advocates.

Finally some good news. All of the molecular markers were in my favour, every single one. They were all back, over a month ago. If a phone call had been made, a conversation had, those results could have been relayed to me at my follow up appointment. I was happy to receive them myself because as they were told to me, he smiled. There's that bit of hope I needed someone else to have.

He since this day offered to introduce to me to a retired CLL hematologist who I saw late last week. My questions were answered in an informal environment, I was provided the information I felt I needed to carry forward, even if it wasn't what I had hoped to hear. But, this post isn't about that. This retired physician came in, just to see me, as a favour. He saw me within two days of hearing about me. He also suggested a test for me to have, a test that would be performed at the Mayo Clinic and cost me close to 700 dollars. It was to look for a mutation on my immunoglobulins, if this mutation is present I could potentially have a great outcome with the triple chemotherapy I will require (FCR). There are a few people around who have been walking "well" for 15 years I was told. I wanted to have that test - again data. I asked him "Please Clarify - these people are still alive and doing well?" They are, he said. I contacted the pathologist - who by this point really deserves a name (Superman? Pathman?) and asked him if he could look into it. Look into things he did. By the end of that afternoon, there was a sample of my blood on route to the Mayo Clinic in the USA and even more, he told me it was no charge. I cried, of course but finally I cried out of sheer gratitude and thankfulness.

You see, through the darkest of times you witness the sheer good will of humanity, empathy and going the extra mile. You are a part of the overarching picture in witnessing people doing what they do, every single day. Taking the extra time and effort to go above and beyond - this is what makes our profession so very special and as a patient this is what encourages me to recognize how very much people care and truly understand their role on the other side.