Mary Had a Little LAM

After my first panic attack, I began to randomly feel a sense of dread, panic and shortness of breath at strange times. I started to experience sudden panicky feelings that made me act and behave in ways that I had never done before. For example, there was the time I inexplicably but desperately wanted to immediately get off a public transit bus 12 blocks from my destination, the grocery store – a trip that I had made every week for years. In the moment I could not rationally identify the stress response that was happening in my body before the urge to flee took over, there was no time, it was primal and demanded my full attention. I followed what my instinct was telling me I needed to do to be safe. The minute I got off the bus the panic subsided. Of course, there was never any real danger on the bus and once the threat was taken care of, the feelings diminished to a dull roar that allowed me to carry on with my day – I walked the last 12 blocks to the grocery store.

Looking back now I can identify that due to the enormous amount of stress that I was under, my mind and body incorrectly interpreted the regular movement and vibrations of the bus traveling over the roadways as a possible emergency situation. Anything out of the ordinary in my life was now being subconsciously interpreted by me as a possible hemorrhaging event. Thus, while riding the bus my subconscious mind sent a signal to me that I was in danger on the bus and I had to get out now. In order to remove myself from the perceived threat the predictable cascade of stress hormones and a feeling of panic kicked in and made me move.

I can also see now that I was struggling desperately to figure out a way to work with the doctor’s ‘wait and see’ approach which left me on high alert 24/7 trying to anticipate when the big event would happen. I was in a way, figuratively ready to call 911 so someone could whisk me away and remove the tumor in time before I bled out. I was scared, sad, angry and frustrated – I was not doing good.

By early 2002 I was back at the nephrologist’s office to go over the latest results of yet another CT scan. I sat on examination table while I waited for the doctor to arrive. I shifted around on the table thinking that the crinkle of the paper seemed too loud in the small space. The doctor knocked and came through the door with his now familiar smile. The latest CT results showed that the tumor was slowly growing but did not present imminent danger (tell that to my brain please), and I was only having abdominal pain from time to time that did not require any medication. This time, at the end of the appointment, I gathered my courage to ask if it would be possible to get another opinion about the situation. I tried to explain what the ‘wait and see’ approach was doing to my mental health and that I was hoping he could recommend a doctor who would be willing to look at my situation and suggest options other than calling 911. I knew that mentally I was at my breaking point.

He immediately agreed to do so without any question and arranged for the referral. I left his office feeling lighter, relieved and felt like I had direction again; I was working towards a solution and not just dreading the day that Moe decided to blow. My mental state was not addressed during that appointment despite my request for a second opinion so I guess I must have been holding it together well enough; but the anxiety was still there, just under the surface.

A month or two passed and the day of the referral found me feeling hopeful and full of energy for the first time in months. The nephrologist that I was referred to was in the same medical building off of Macleod Trail in Calgary, just a little further down the hall from where my regular nephrologist kept his office. Again, my boyfriend took time out of his day to come with me and offer his moral support that I so desperately needed; with family being so far away from me he and a handful of close friends were all the support that I had.

The office was almost identical in size and layout as my regular nephrologist’s. When my name was called I went in to the examination room alone, eager to meet the new doctor who had decided to have a look at my situation.

I sat excitedly on the edge of the examination table, trying to not crinkle the paper too loudly while I waited and tried to look through an old magazine from the waiting room that I brought in with me. The doctor knocked and came through the door introducing himself. This doctor was young… so young. I thought that perhaps he and I were probably about the same age. He did not make eye contact but instead focused on my chart. He quickly glanced through my medical history and casually said to me ‘I can take it out tomorrow if you want…”.

Hell. No. His nonchalant, laissez-faire attitude freaked me out. This was my body and my life that he was so casually addressing here. Nope. No thank-you. I politely thanked the doctor for his time and left his office deflated. I was gutted and beyond disappointed that this doctor had not asked me more questions about how I had been handling my stress, hadn’t offered treatment options or taken the time to get to find out more about me (like… what type of work do you do?). To be fair, this was a referral and I was not his patient officially (I don’t think), he may have been rushed and behind with patients that day or had just been having a craptastic day (we all do from time to time).

Either way I knew that this doctor was not the right fit for me so I called my regular nephrologist’s office again and explained my disappointment with my referral appointment and asked if it might be possible to get another referral and a third opinion. No questions asked, they very professionally said that they would do so and that the third nephrologist’s office would contact me with the date and time of the appointment.

I feel I should remind people that back in 2002 as this was unfolding for me the internet was in its infancy and social media sites like RateMyMD and other medical websites that could have helped me find out about treatment options for an angiomyolipoma or learn about integrated health care had not been created online yet. I had to solely rely on the expertise and information that was the domain of medical experts and meet doctors face to face in order to form my own opinions.

Several months passed and it was finally time for my appointment with a third doctor to discuss my options about Moe. By now it was early in the fall of 2002 when I found myself once again in the same building as the first two nephrologists. But this time the third doctor’s office was at the very end of the hallway; and the waiting room had nice furniture; it seemed quieter, calmer.

Again, when it was time to meet the doctor I was shown in to yet another examining room that was much like all of the other examining rooms that I had encountered as of late. I positioned myself on the examination table with the same crinkly paper that was indistinguishable from all of the other examination tables I had been in and waited for the doctor once again. As I waited I told myself that I was just here to see what this doctor would say. The knock on the door came as he entered the room. The doctor shook my hand and introduced himself.

He began by telling me about his experience with this type of tumor and that he had seen and operated on several women in both emergency and non-emergency situations that presented as I had. He continued by explaining to me the several established options for dealing with an angiomyolipoma; leaving them alone until hemorrhage and emergency care is required; a procedure that involved forcing the tumor to die by cutting off its blood supply while leaving it in the body; or surgical removal. Each option had its own set of risks and benefits which he clearly and patiently explained for each scenario.

He got it.

I immediately knew that I had found the right doctor. He was the only doctor who had told me about his experience with angiomyolipomas and was the only one so far that had actually taken the time to explain all the options to me.

I knew what option was right for me. I wanted this tumor removed, permanently. I was assured by the doctor that there was no rush and was given a couple of dates several months away that would allow me to go home and take the time I needed to think and talk things over with my family and boyfriend.

I had the option of having the surgery just before Christmas of that same year, or I could choose February 2003. I didn’t want to be recovering from major surgery during Christmas and so I chose to have Moe removed in early 2003.

This was the doctor that was going to take this journey with me.

As I left the doctor’s office I finally felt relieved and like I could relax for the first time in a year or more, the end to this nightmare was in sight! However, my feeling of relief and peace were short-lived.

The stress and worry for my future should have dissolved now that I had a doctor and date in the near future to have Moe removed. But if anything, my anxiety and sense of panic reached new heights because a fear that I had pushed away and had successfully avoided until now was raising its ugly head again.

A few years before, my lungs bled for no apparent reason when I went swimming, an activity that I had always been able to enjoy until very recently. I began to think about the details of the surgery itself and began to consider what might happen to me when I was intubated and a machine had to help my lungs breathe during the surgery? Up until this point I had essentially not dealt with any of the thoughts or feelings around the time my lungs hemorrhaged and I ended up in the hospital. The impending surgery to fix my angiomyolipoma suddenly and very painfully compounded and magnified all of the dark thoughts about the summer that my lungs bled.

In my mind I had been able to control the unpredictable nature of my idiopathic hemosiderosis by rationalizing that my lungs only bled when I was swimming in a large body of water – easy, I could control that. No swimming – check. Live like each day is the last – check. But now I had to really consider the demanding and somewhat unknown conditions and stresses that my body would be put under during surgery. I was almost certain that my lungs would bleed again.

The bleed in my lungs was the closest that I had ever come to death, and I did not want to go there again, but I could not live with the slowly growing angiomyolipoma and the almost certain possibility that it would one day hemorrhage inside of me. So – did I ricochet from one panic attack to another every time I had a twinge in my abdomen in order to avoid putting my lungs at risk of another bleed; or did I take the plunge and go ahead with the surgery? (bad pun, sorry). Was it worth risking the health of my lungs to take care of the growing tumor on my kidney? Would I be able to emerge unscathed and finally be able to get on with my life once and for all?

Image ‘Window Prague Twins’ by Martin Pyško from Pixabay