February 3 has had a significant impact on my life for 19 years. It is the day I lost my mother to suicide at 15 years old. It changed my life forever. I mean, how couldn't it? Every year on this day, I honour our memories, do something kind for myself, spend some time with my sister. Whatever I can do to just feel peaceful. Its yet another reminder to hold those that I love a little tighter.
This year, February 3 was an asshole. I had my first appointment with a hematologist and was "delivered bad news" as we call it in medicine. I've never been on the other side of the desk for this type of interaction and let me tell you, it didn't start off well.
I arrived for my appointment with my gal pal Erika, another family medicine resident who I also live with. She sat beside me with my notebook of questions to ask, held my hand and made jokes while laughing at my periodic rage outbursts. She rocks.
My first moments were not amazing. First, an RN came into the room to take my vitals and introduce me to the clinic. Remember the "don't make assumptions"rule? Here is where things went wrong. This RN opened up our dialogue saying he would ask me a "bunch of stupid questions" and I told him none of them were stupid. He went on to ask me many questions, though was answering a lot of them himself, assuming I had no other symptoms or complaints. At one point he said "I assume your parents are alive." That didn't go well. I matter of factly asked him why he would assume such a thing. He seemed dumbfounded. I further responded, telling him I lost my mom at 38 years of age to suicide.
His next assumption was when he assumed I knew my diagnosis - I was a doctor after all and must have done my research. He went so far to say "So I assume that you have lymphoma, since you are at this clinic and when you leave we can give you all the info on chemo." There were a lot of expletives in my mind happening, but instead my gal pal piped in with perfect timing "Thats why she's here. To get her diagnosis." I then looked at him in fear and asked if I needed chemo. He responded that he actually hadn't looked at my chart and didn't know my diagnosis, nor did he know if I needed chemo. He then told me we were moving rooms and it would be better for when I had my bone marrow biopsy and aspirate. "Im having a bone marrow biopsy? No-one told me that." He told me he didn't know but I might have one; at this point I thought I might actually lose my mind.
So, in that one interaction (my very first interaction at this hematology clinic) here were the assumptions made:
1. I had two parents, both of whom are alive (I don't, neither are true)
2. I knew my diagnosis (I didn't)
3. I was aware this was a lymphoma clinic (what? it is?)
4. I was leaving with an info pack on chemo, for the chemo I may need (which I don't need)
5. I am a doctor so I thoroughly researched my potential diagnosis and looked up my labs and biopsy online (I stopped reading literature until I knew I had a diagnosis. I did not look up my results)
6. I was aware that I would likely require a bone marrow biopsy and aspirate, but did not explain to me how this was done or what would ensue. (I had no idea that would even be offered on an initial visit and had never seen one)
7. He assumed I could and should be treated as a doctor, not a patient. That is unacceptable.
Thankfully, I didn't have to sit with this uninformed clinic RN much longer. I have to wonder what the prerequisites for this job entailed. My first outburst of anger and rage took place in that room and I didn't feel bad about it. I still don't feel bad, he got the tip of the iceberg. Next, I was moved to another room and waited for another hour to see the hematologist. I didn't really mind, I understand clinics run behind. I am often the one on the other side running around trying to see patients timely and efficiently, without rushing through my interactions. I get it. I also liked sitting there still not knowing anything, it was freedom in a sense. I knew the minute he walked in would change my life forever. And it did.
Luckily, things turned around. I was treated with compassion, yet without catastrophizing what was being delivered to me. I was talked to like a patient who was informed with medical jargon and terminology and I felt my concerns were heard and replied to. When he couldn't answer my questions, he told me he didn't know the answer. He helped me find answers while we sat together. We looked things up on the computer and he went through every single investigation I had over the past nine days with me. We discussed the results from the 19 tubes of blood I had provided, my four neck biopsies (more about those in a future post), CT scans of my neck,chest,abdomen,pelvis and specialized flow cytology from the Mayo Clinic. For the first time, someone sat with me and acknowledged my concerns and at one point he looked at me and said "I'm sorry. This really sucks, its bad luck" - the difference was that he meant it. It really did suck and he knew exactly how I felt and finally, at last, I was being treated like Dr. Keough the patient, not Dr Keough the doctor.
I chose to undergo the most painful physical experience I have ever endured so I could have a better idea as to my prognostic factors that may be in my bone marrow. As Erika said, I was in data collection phase and in order to move forward, the more knowledge the better. Here is where I have another moment of anger and rage. As a new nurse is setting up for the procedure and I'm laying on the procedure table, covered in drapes for sterility she asked "So, did this interrupt your day coming here today?" - I asked her to repeat her question because surely that was not what she asked. Yeah, she actually asked me that. I told her this interrupted MY LIFE (capitals to accentuate this). She actually asked me if I had patients to see after this appointment. (Are you kidding me!?) I did very bluntly say "today is not the day for me to be a doctor."
I should have told her this kicked the shit out of any potential bad news I have ever delivered to anyone.
Finally, she asked me if "I knew what I had." She didn't know. (was I surprised? Not at this point). Again, she didn't inform herself prior to interacting with me and should not have been in the room with me immediately after I received my diagnosis. Those moments in a persons life are of vulnerability and emotion, it is a humbling time in a patents life and also for those individuals who are there. She didn't deserve to be there.
If this wasn't enough for one day, I then underwent a bone marrow biopsy and aspirate. Now, they don't teach you about how this feels in medical school. But let me tell you, neck biopsies (even without freezing or anaesthetic) have nothing on this procedure. Even at 38km of a marathon, the pain in your body compares mildly to that of having a large needle driven into your hip on the "I'm tough" scale. I'll save you the details. Lets just say I'm still walking like I am wounded, unable to sit and have an intense, deep bony pain that persists even with some great meds. We as patients need to know that the biopsy is not simply a short extrusion of bone (see below), your iliac loses a little bit of weight! When they take the aspirate, the sensation ripping down your leg like sciatica and into your back is essentially negative pressure inside of your body, deep in your hip - there is no way I can possibly describe the character of this pain. You experience every sensation and tactile movement, on a heightened scale. No, you definitely can't run for two days after (I wanted to try). At this point, I can take a lot of pain but this was torture.
I left my appointment yesterday feeling empowered. I really did. Finally, I had my answers and all investigations were complete. I could work with the information I had and move forward, live my life and lean on those around me (near and far) for the first time. I'm really terrible at asking for help, I don't like to give up any independance, but I've already learned that if I keep that attitude it will not work in my favour.
My entire life, I have always lived in the moment, travelled the world to become enriched and educated, valued my relationships, worked hard and feared I would someday have a leukaemia or lymphoma. Its oddly ironic, but here I am. The universe has truly dealt me a hand that even I think is unfair, cruel and as the hematologist said - really is bad luck but who's to say I'm not due for some good luck. I can only hope.