Beware of the Zebras!

After my diagnosis and intermittently since I was diagnosed I sometimes lie in bed at night and think to myself, "Why wasn't this caught earlier?" Since we moved to Boston I've been regularly visiting my PCP doctors and thinking back on the events leading up to the diagnosis it seems clear that something was wrong.

My "medical monitoring" started in December 2009 after Autumn and I drove across the country and I was diagnosed with a DVT in my left calf. At that time I was seeing my PCP doctors twice a month which eventually turned into a monthly visit. In the beginning the DVT diagnosis precipitated by a prolonged cross country drive made sense; however as the weeks and months passed on something wasn't right.

I remember going into the doctor's office, nearing tears, complaining about pains in my leg and being shooed out of the office with another pain medicine prescription. I remember telling the doctors that I don't want pain medicines, I just want my leg to be cured. Every visit ended the same way, "Let's check back in a month and see how you feel then."

I tried wearing compression stockings on my left leg to alleviate the swelling pains from the DVT and shortly after I returned to the doctor's office complaining that I couldn't move my great toe and could barely move the other toes. This turned into the hot topic of discussion at my monthly appointments and every month we'd monitor the movement of my toes. They never really moved but I got used to them and stopped complaining. "We'll see you in a month."

At one point Autumn suggested I get a scan of my legs; I was having pain in my DVT leg and my right knee had started to hurt (attributed to my compensated stride). A scan of my knee seemed to be a reasonable request especially since I think I had injured it over a year ago; however, for the scan of my DVT leg we needed a second opinion. I remember three doctors gathering around me in an examination room looking at my leg and my immobile big toe. I remember hearing them say, "That's strange. I've never seen that before." I got approval for the MRI of my knee but the DVT leg received it's standard treatment: "Let's see you in a month."

Six months later I was diagnosed with a myxoid liposarcoma in my DVT leg.

Last week I decided I wanted to talk to my PCP doctors and tell them about my nights lying awake in bed and how I was feeling. I'm a strong believer of confronting your feelings head on and approaching people directly. My psychotherapist thought I was a masochist. I don't really know what I wanted in meeting with my PCP doctors. Maybe I wanted them to say that they were wrong. Maybe I wanted an apology.

But really I wanted to warn them about zebras for the next patient. There's a saying, "When you hear horse hooves, you look for horses not zebras." With the DVT diagnosis all my complications seemed to have a source. We never questioned an alternative source; it all made sense, but clearly this was a zebra.

The appointment was this afternoon. The meeting was difficult and I started crying the second I saw my PCP doctors. I told them everything I was feeling and by the end of my story they were fighting back tears as well. One of the doctors put his arm on my shoulder and told me how very sorry he was and we ended our meeting with sentimental hugs.

Even though I wanted to see them so that I felt better, I think they needed to see me so that they could feel better. Just as Autumn, my Dad and I have beat ourselves up for not catching this earlier, they too were tormented by the same feelings: scouring their notes and speaking to their colleagues about the situation. They thanked me for coming in and talking to them about my feelings.

I'm glad I went to talk to my doctors today. I think we all needed it.

For everyone else reading, beware of zebras! Listen to your body and if your not getting what you need, get that third, forth, and fifth opinion. Don't wait "another month" till you really have a problem.