In a nutshell I learned from the on-call GP who saw me that day that the tumour wasn’t cancerous. It was instead a benign tumour composed of fat and muscle that had a blood supply of its own. Relief flooded my body.
The CT that I underwent a few months earlier revealed that the tumour was located on the lower lobe of my right kidney. My Patient Diagnostic Report (2001) of the CT described the tumour in the following way:
A large mass occupies the inferior pole of the right kidney. The mass is complex and contains a large amount of fatty tissue on its superior margins and a large amount of enhancing solid soft tissues around its inferior margins. It is consistent with a large angiomyolipoma….the large right renal mass measures at least 11 cm in craniocaudal dimension and about 8 cm in diameter.
Well- the size and location of the tumour explained why I had been experiencing the intermittent knifing pain in my gut for sure. As the tumour was growing out of my kidney, the GP that I saw that day referred me on to a nephrologist (a kidney specialist). I was given reassurances from the GP that this diagnosis was good news, and I did indeed feel like I had dodged another bullet.
We walked out of the clinic with a lighter step and I remember kind of elatedly floating home. We finally had an answer. The tone of my treatment changed right away. The sense of urgency in my care evaporated and to me that signaled that the danger was over; this was going to be a manageable thing that was not life or death.
I can’t remember quite how long I had to wait to meet the nephrologist, I think it was 2 or 3 months. But between the time of receiving the news from the GP and getting a date to go in to see the nephrologist, I had made a certain peace with the fact that all I had was a fatty tumour. I was in my mid-20s, my career was starting to develop, I was in a committed, long-term relationship and was ready to get on with living my life. Between getting the diagnosis of the angiomyolipoma and seeing the nephrologist I began to mentally prepare myself for discussing with the doctor how we were going to ‘take care of’ or remove the tumour. I was tired of the pain and discomfort, thankful for the diagnosis and was ready and willing to take care of this quickly and get on with more important things!
The events that had unfolded in my life up until that point had all happened before the age of the internet and so I relied heavily on the information that was given to me by the doctors that I visited. After my diagnosis of the angiomyolipoma, I recalled that several of my family members also had fatty tumours; my maternal grandfather, my mom and one of my siblings all had small, superficial tumours that were removed with local anesthetic. I hypothesized that this was a family genetic trait and that I was just unlucky to have a fatty tumour that had manifested on the inside of my body instead of just under the skin like my other relatives.
The day of my initial appointment with the nephrologist was a cold, grey fall day. The nephrologist’s office was in a nondescript low, brown brick office building just off of MacLeod Trail and past Chinook Mall. As my boyfriend and I opened the door to the doctor’s office I remember thinking that I was in the wrong place. The waiting room was full of middle aged and older men – it was all men. I was the only woman. I checked in at the desk expecting the receptionist to tell me that this was a prostate clinic and to direct me to another office down the hallway. Nope – this was the place.
When I met the nephrologist, I was struck by his friendly and positive outlook of my diagnosis. We discussed my health history including my hospitalization for idiopathic pulmonary hemosiderosis (to be fair no one made any connections with my health until very recently). He was a busy man and quickly outlined the treatment protocol that would be followed for my case. This is what I remember from my first doctor’s appointment with him:
- He was going to continue to monitor the tumour’s growth every six months with a CT scan with contrast (ugh).
- I was to go to the emergency room if the tumour hemorrhaged *I’d know if this is happening if I suddenly were to have incredible pain and/or start to feel faint (wtf?!)
And that was it. That was the plan for the foreseeable future. 6-month CT scans and waiting for my tumour to bleed out was now my new life.
There was no long-term plan to manage my health. I left the office with a mixed sense of relief and a feeling like there was a huge question mark over my head about the next few years or decades of my life. I was deeply disappointed that there was not any talk about the removal of the tumour and at that time I didn’t even know that there were any other options for dealing with this type of tumour.
I was conflicted about how I should feel about this turn of events. I mean, a lot of other people were in waaayyy worse situations and dealing with much more difficult diagnoses than I. If I complained about the treatment plan my doctor had outlined would I be looked at as an ungrateful young woman, worse yet be labeled a non-compliant patient? I kept my conflicted emotions to myself, but living on a 6-month schedule really curtailed my ability to think clearly about my future. I confided in some of the people that I worked with what was going on in my life and one of my coworkers suggested I give my tumour and newfound companion a name so as to come to terms with my new reality; he suggested Moe.
What I understood from my nephrologist is that having an angiomyolipoma meant that this was a ‘live with it’ type of medical situation; live with the pain that it was causing, live with the knowledge that more than likely someday I would hemorrhage from the tumour. Just get OK with not being OK.
So I did.
I went every six months for the awful CT scans, and then waited on pins and needles until I could see the nephrologist again to find out if Moe had grown or stayed the same. Moe’s growth was slow, but the mental strain of knowing that I had a ticking time bomb in my abdomen began to wear on me after a couple of years. Anxiety started to mount around the days and weeks leading up to the regularly scheduled CT scans. Soon, I began to think that every little lump of food in my gut or trapped fart was my tumour bleeding out. This might be the time when Moe would blow! I began to be hyper-aware of my body, I felt tense all of the time and the worry about what my body might do devolved into a constant string of unhealthy, panicky and sometimes morbid thoughts that would not stop. And then, out of the blue, on a lovely summer evening I had my first panic attack.
Its hard to explain a panic attack to someone who has never had one. I had had a bad shift on the day of my panic attack; I was a manager with a heavy customer service component, so that residual work anger and adrenaline became the perfect fuel for my months-old simmering anxiety. That night my body became a boiling pot of uncontrollable shit that just could not be contained and didn’t make any sense to my body or brain. My panic attack started for me on the C-train on the way home from work. The upper windows on the train looked too small, it felt like there wasn’t enough air in the train car even though there was no one in the car with me and all the windows were open. I practically ran-walked home from the C-train with my racing thoughts and by the time I got home to my boyfriend and our apartment I felt like I couldn’t breathe (he pointed out I had lungfuls of air to walk home and talk with). I couldn’t sit still. I was shaking and shivering uncontrollably. I had my boyfriend rub my back. I wrapped myself in a huge blanket and rocked back and forth on the bed still shaking and shivering. I had no idea what was happening to me so I called a friend thinking that I could talk myself down (she was lovely, but it didn’t work). I thought I was dying. My boyfriend offered to call 911 but I told him no.
And then it was over. The adrenaline left me. I was a wasted, exhausted shell, embarrassed but glad that my boyfriend and friend on the phone had been there to comfort me.
The next day I tried to put the incident behind me, but I knew my resilience was slowly being worn down. After my first panic attack I felt like my body was now always vibrating, fueled by a low-level anxiety and that I could no longer cycle down to ‘calm mode’. After almost 3 years of scans and always waiting for a hemorrhage to happen I decided I couldn’t live like this anymore.
Moe had to go.
Image “File:Kidney Angiomyolipoma SolidVariant MP2 CTR.jpg” by Sarahkayb is licensed under CC BY-SA 4.0
Mary Had a Little LAM 