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Similitude (or déjà vu)

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?

Moe

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.

“Angiomyolipoma – causes, symptoms, diagnosis, treatment, pathology” by Osmosis is licensed under a CC-BY-SA 4.0

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.

‘Party Like It’s 1999’

Calgary in the 90’s was the perfect place to begin life on my own. Jobs were plentiful and rent was cheap. The sun shone for most of the year, friends were easily made and that wide open blue sky just continued forever.

I tried to forget what had happened to me in Pincher Creek – I chalked it up to a freak accident, dodging a bullet. But out of the blue my mind would go back to that summer and start to play over the sequence of events, tumbling them around, trying to understand why the bleed in my lungs happened. The wonder would always turn to a deep, black dread that would threaten to rise up inside of me; thoughts like ‘what if it a bleed happened again, outside of the water, just walking down the street?’. That sense of panic and confusion sometimes turned instead to elation for having dodged a bullet – maybe THE bullet. Most people don’t have something this serious happen to them, right? If I had dodged my bullet, nothing else bad could happen to little ol’ me – so let ‘er rip right? I quickly found a job, a place to live with friends. School could wait.

Physically I felt fine, great in fact. I was too poor to own a car or even a bus pass when I first arrived in Calgary, so I had my family send out my mountain bike to me, and for a few years walking and cycling were my main modes of transport. My body was in perfect shape, I never tired and felt like I could walk and ride forever. I did however take other risks and do things that I had never thought of doing before the accident; on my bike I would weave in between cars along 17th Ave; I went out to smoky bars and drank too much, staying up all night long; I darted across C-train tracks when it wasn’t safe; I got a few tattoos and piercings. I was living life, having fun and trying to drown out the indistinct but very present black panic that I had felt ever since my ‘swimming accident’.

In the middle of my new exciting life I met and fell in love with my husband. We met by both going stag to a mutual friend’s Y2K New Years Eve party. The first time we went on a date I felt an almost indescribable level of comfort with him that I have never experienced with anyone else; I could literally hear us ‘clicking’ in to each other. He is my better half and we really do finish each other’s sentences. He is the smartest person I have ever met and we can always make each other laugh. While dating and during the early years of our marriage we would often go cycling and hiking, we were always active and enjoyed the outdoors together year-round. I am so fortunate that we were able to share those healthy, youthful years together.

About the same time that we were becoming more serious as a couple, I began having brief, short lived, random bouts of knife-like abdominal pain. The same pain that I felt as a young girl; the lightning in my belly was back.

That summer, the pain and frequency of these attacks increased, so much so that I went to a walk-in clinic asking for help. I didn’t have a family doc at the time – it was next to impossible to find one in Calgary during the boom years. I explained my symptoms to the GP (General Practitioner) and she did a quick exam and concluded that it was probably IBS (Irritable Bowel Syndrome). I was referred to a GI (gastrointestinal) doc and would have to wait for the specialist to call with an date for an appointment and a definitive diagnosis. There was no gas, strange bowels or blood, just random bouts of stabbing, excruciating pain. I decided to improve my diet and had started regularly taking enterically coated peppermint oil capsules, which seemed to help most of the time. When it got really bad and I had an ‘attack’ I would just crunch one of those capsules up in my mouth for an extra kick.

The pain continued to escalate, so much so that I once called in sick and stayed in bed for a full day, curled in the fetal position waiting for the pain to subside (it finally did). Walking too became problematic because from time to time it seemed that this motion would aggravate my condition. I remember multiple times having to stop walking and gingerly sit down on a curb, bent over, waiting for the pain to pass. But I held out waiting for the appointment with the GI and remembering that the visit to the GP didn’t find anything to explain what was happening.

By the late fall my then boyfriend and I had moved in together and I finally heard back from the GI with a date for my first appointment. I remember it was a rainy day when I walked to the specialist’s office, located in a medical building just outside of the Kensington area in Calgary. I told the doctor about my symptoms (knife like, all around my abdomen etc. etc.), my health history (including the lung bleed) and provided my thought that maybe it was IBS. He did an examination and agreed but also wanted me to have an ultrasound just to be sure.

Since I was not in any pain on the day of my doctor’s visit and my condition did not appear to be urgent, several months passed before I was scheduled for the routine ultrasound that would help the GI in making the correct diagnosis. Going to get an abdominal and pelvic ultrasound was going small peanuts, I sent my boyfriend to work the morning of the procedure assuring him that I was comfortable in a medical setting and felt like an old pro since Pincher Creek– no big deal. I was thinking it would be so great to finally get a diagnosis and fix my digestive woes!

On a cold and slushy spring morning I took a cab to the lab in downtown Calgary where my ultrasound was scheduled. The clinic was very clean, the room where my procedure was to take place was softly lit and comfortably warm. The gel they used with the wand was warm too and I relaxed as the tech told me to turn this way and that, taking picture after picture. And then more pictures…. After some time had passed and she was still taking pictures on my right side I had a suspicion that something was up, but she was very professional and gave me a smile when the procedure was over. The procedure was a pain free event and I went on to work rather relaxed and a bit perplexed that the technician had taken so many pictures.

I kind of forgot about the appointment; weeks passed by – no news was good news – right? The snow melted and the grass turned green. Fresh bright green buds began to appear on the trees again. On the first really warm day, a co-worker told me that I missed several telephone calls while working with a client. Annoyed at the persistence of the caller, begrudgingly I returned the call, and listened to the GI doctor tell me in a grave voice that the ultrasound had found a tumor on my kidney and that I had to have an CT scan as soon as possible to obtain a full diagnosis. He would contact my GP right away to arrange the scan and a follow-up appointment with my GP.

Wait.

What?

I felt OK, like, my lungs weren’t bleeding, this wasn’t an emergency. In fact, I felt fantastic; so what the doctor told me over the phone didn’t really sink in or have an effect on me, my reaction to the news on the phone was more like a ‘Huh! Really? Ok, thanks.’

That same week I met with a GP at my local walk in clinic. I arrived and was immediately ushered in to the examination room, I didn’t even have to sit in the waiting area, I was surprised. My appointment with the GP consisted of a palpitation of my abdomen, a Q & A and coaching that I remember going something like… ‘don’t panic, get lots of fruits and vegetables in your diet, take it one step at a time, we will get through this together’. She was kind, and had a laser focus on staying positive, I didn’t see pity in her eyes, just determination and I drew strength from her.

As I left the GP it sunk in, I had a mass on my kidney and the doctor – the first I had seen in person since getting the news – was worried, even if she appeared strong. I had never seen a doctor that fast before, never seen a doctor so concerned for me, never had an appointment for a test lined up that quickly – shit, this was bad. I left the office feeling like my head was floating five feet above my body, nothing felt quite real. I don’t remember how I got from the medical building to the sidewalk outside, where I met my boyfriend to tell him the news. I might have cancer.

After the initial shock of the visit to the GP, I continued on with life as normal as much as I could; my reference to the medical world and hospitals had been in an emergency situation. I wasn’t bleeding like before and so I was able to somehow compartmentalize and separate what was going on with my abdomen and kidney from the rest of my life.  The routine of work was a welcome distraction and kept my growing anxiety at bay. Through all this I physically felt strong and healthy and assumed that the CT scan procedure would be similar to an ultrasound. On the day of the CT scan I told my boyfriend that I was fine and that I would take a close girlfriend along for moral support. She and I took the C-train to the hospital up to the north end of the city and planned to shop in a nearby mall after my appointment.

We arrived and I changed into the gown and chatted with my friend while we waited for my name to be called by the technician. When my name was called I was brought in to a chilly room and the technician told me where to lie down and helped me get comfortable on the table just outside of the big doughnut-shaped CT machine. I was given a waiver to sign and a quick explanation about the dye that they used for abdominal CT scans while an IV was inserted in to my arm. The CT scan began.

Even though the tech told me that I might feel a ‘warm sensation’ as the dye was being injected I was not quite prepared for the physical sensations of the moving table I was lying on along with the whirring rush of huge magnets swirling around my body while a disembodied voice told me when to hold my breath and when to breathe. The warm, flushed (not in a good way) feeling along with the sensation that I had just emptied my bladder on to the moving table of the CT machine along with the week-old anxiety of knowing I now had a tumor was almost overwhelming. I wanted to get off of this ride.

The procedure was painless and quick but nerve-wracking just the same. The technician was at my side as soon as it was over, efficient and courteous; I could tell that they had a full roster of people to get through. I shakily got off of the CT table after the technician had removed my IV and walked on rubbery legs to the waiting room where my friend waited for me. I felt like a cat that had just escaped being accidentally put in the dryer for a few minutes. I was so glad my friend was there to talk to that afternoon as the adrenaline wore off.

Now the wait began. I tried to not think about what type of tumor it was and what the approach to treatment would be. I would cross that bridge when I came to it. The walk-in clinic called me back within a week; they wanted me to come in to discuss the results with a GP.

This time my boyfriend came with me and waited in the waiting room while I was quickly escorted in to the doctor’s office. Again, I didn’t have to wait long, the door swung open, this was it.

A new doctor came through the door with a smile on his face; I didn’t have a cancerous tumor, I had an angiomyolipoma.

 

Dam(n)

~ Do you remember that time in your life when you knew nothing about living but felt strong and confident enough to want to pull away from your parents, and that you were ready to make your own way in the world?

For me that time arrived while working at a summer job in Waterton, Alberta. I wanted to get away from home during my university summer break and I successfully secured a summer position that I had found posted on a university student employment board. Just before I left home I had started taking thyroid medication for hypothyroidism. That summer I felt like I had gained back the strength and energy that I had not experienced since I was a kid. I felt resilient, strong and capable. I had energy to spare. I felt clear. The timing was right; now was the time to strike out on my own.

My plan was to move to Calgary after my summer job was over in Waterton by using the bonus money my employer would award me upon completion of their contract. I didn’t know how I would finish my university career which I had started while living with my parents in Eastern Canada. I decided to register in some distance courses over the phone for the upcoming fall term; the books and VHS tapes were in the mail and on their way to Waterton. I planned to study while working in Calgary that fall and winter – I trusted that everything would fall in to place.

And then in the middle of that golden summer, my new beginning, my lungs almost killed me.

My summer job in Waterton was in housekeeping for a locally owned hotel in the middle of town. It was a physically demanding job, but I had energy to spare and took pride in my work. I gladly supplemented my income by taking on extra cleaning jobs for local home owners and the Anglican church once a week for the summer. My coworkers and I were a tight-knit group who all got along well and were all close in age; we were quickly becoming friends. Together we enjoyed doing things together after work and on our days off; hiking Bears Hump, Bertha Lake, trails around town and the Prince of Wales hotel, horseback riding, nights at the Thirsty Bear dancing the night away. The early summer was already hot and dry that year and talk of swimming in Waterton Lake after work was often a topic of conversation.

Finally, one afternoon after work we made it down to the lake. We spread our towels out on the dock and slipped in to the still frigid water. So refreshing! I paddled around a bit, near the dock. I have never liked the fact that you can’t see the bottom of a lake and what might be lurking there to tickle at my toes! After a few moments I began to have a familiar sensation seep in to my lungs and I began to have the urge to cough. That same dry, hacking cough that I experience with mom in the pool many winters ago was back! I instinctually swam directly to the dock and pulled myself up out of the water. I lay down on my towel to warm myself up in the sun, my body shaking from a mixture of the cool water and the racking cough which seemed to slowly calm down as the droplets of water evaporated from my body in the summer sun. I felt fine, as long as I wasn’t in the water. At the time I don’t remember making the connection between this incident in Waterton and the earlier one that happened with my mom in the public swimming pool.

Fast-forward a few months, the days were still long and hot but you could feel that things had begun to arc towards fall and winter. The planters that were once lush and green had a tired, dried appearance that did not go away even after a good watering; the black bears had started to come in to town, lured by the scent of unsecured garbage cans – humans be damned. As a group of girls working long hours together all summer long we had become close and decided while the sun was still hot and the weather warm that we would get out of town for a day, have a sleep over at a co-worker’s home and visit a local swimming spot that was also popular with wind surfers, Pincher Creek’s Old Man River Dam.

On the day of our planned get-away, we met after work, armed with towels, swimsuits on under our shorts and zoomed off to Pincher Creek in the only car that a local girl drove to work each day. Windows down, singing along to Blue Rodeo and The Tragically Hip we arrived at the swimming spot mid-afternoon, the prairie sky as always so blue and large, the sun hanging there, seeming not to move. We followed the local girl to a wonderful, sheltered, shallow swimming hole. No one else was around except us. The rocks were warm, the water cool. I felt very adult, independent, expansive – I was living my life. My plan was just to paddle around with the girls, wash off the summer work sweat and then warm up in the sun, relax.

I walked in slowly, picking my way among the rocks. Some of the girls who were strong swimmers had swum out ahead of me to report on the depth and temperature of water (‘just over our heads here!’, ‘it’s not too cold!’, ‘refreshing!’). I swam out about 10 feet from shore, letting the water wash away my tension and cool my head. I tread water looking around at the amazing rock formations for a few moments, talking to my friends. I was planning to swim back and get out when suddenly I had the sudden urge to get out of the water NOW. I felt instantly weak, my limbs like lead. Disoriented and panicking I saw the far side of the reservoir and started to clumsily and lethargically swim towards it thinking it was my closest escape from the water. My friends saw my panic and redirected me to turn around but unfortunately, I had run out of my last ounce of strength.  I could not lift a limb and the water felt like cement. I knew from my swimming lessons to turn on to my back and try to relax in order to help my body float and keep my face out of the water. The girls that I was with that day saved my life.

I was too disoriented to know how they got me to shore, but they did, thank God. The funny feeling in my chest and urge to cough never came like they had before now, there had been no warning this time.

It. Happened. So. Quickly.

When I was finally pulled to the shore and I only had energy to sit at the edge of the water, I didn’t remember how I had gotten there. Dazed, I felt nauseous and coughed once in to my hands and saw what looked to be about a cup of blood and mucus covering my palms and fingers. I stared at my hands, not understanding what I was looking at. But the girls did. Something was wrong with my lungs but it had seemed to stop, for now. They washed my hands at the edge of the water and knew they had to get me help.

We had hiked in a way to the swimming hole and so they discussed how to get me out and asked me if I could walk out. I tried to stand and walk but my legs felt like lead and I had to tell them that I could not go any further than the few steps I had tried. Remember this happened in the 1990’s, before everyone had a cell phone. Our nearest help was a 15-kilometer drive away in the town of Pincher Creek – we were on our own.

Through this whole situation the girls kept their heads, I don’t remember anyone freaking out. They talked as I slumped against a rock and fought off the urge to pass out. They decided that it was best if they formed a fireman’s chair and took turns carrying me out. About half way to where the car was parked I had an embarrassingly overwhelming urge to evacuate my bowels. I begged the girls to leave me behind a large boulder and I pulled my bathing suit aside. I had heard that this happened to people before they died – was this happening to me right now? In slow motion? I always thought death would be quick (and that that part happened after you died). I was too spacey to be scared at this point, it was like I was observing everything that was happening in my body from a distance. I remember through it all just being so completely tired.

We finally arrived at the car, and back to Pincher Creek where my coworkers’ mom was a nurse who went with us to the community hospital as the sun was setting. They put me in a wheel chair when we arrived at the community hospital and when I had to stand up and raise my arms over my head and hang on to a bar to take the x-ray I almost passed out from exhaustion. There they x-rayed my lungs and found that they were completely opaque, white. I just remember wanting so badly to sleep.

Shortly after the x-rays were taken in the Pincher Creek hospital the doctor there realized that I needed urgent care and that I had to go to Lethbridge and to Chinook Regional Hospital right away for proper care. Angels were seeing over me that day and instead of making the 100-kilometer trip that night by ambulance my co-worker’s mom and dad drove me as fast as they could in their big green F150, flashers on the whole way. I sat between them in the front seat, so tired that I shamelessly put my head on that woman’s shoulder as much to rest as for the reassurance of human touch. She tried to talk to me to keep me awake while I fought the urge to pass out from exhaustion. He tensely and quietly drove at high speed, over taking most of the traffic on the road that night. Watching the cars rise up out the darkness in the truck headlights and drift by as we passed them felt surreal – I was in a daze and not processing things properly.

Seeing the bright lights of the hospital in Lethbridge was strangely a relief. The Pincher Creek hospital had called ahead and a group of nurses and doctors were waiting for me when we arrived. The gurney that I was finally allowed to lie down on felt so good. I remember being poked in my wrist more than once by a nervous attendee – I wonder what I must have looked like; pale, grey, blue? Thankfully I had not coughed up any more blood since I was pulled from the water. I just wanted to sleep so badly.

My co-worker’s mother stayed with me that night and what I think was until the next day until my mom was able to secure a flight and flew out from the East coast of Canada. I watched and listened as the two mothers, who also both happened to be nurses, met at the foot of my hospital bed and shared theories on my mystery illness/incident.

I will be forever grateful to my co-worker’s mother and father for taking care of me like I was one of their own. I will always appreciate the selfless acts of kindness they did that day and night and for staying with me until mom arrived. I will always have enormous and unending gratitude for this fine couple and for my friends who saved my life that day. Words are not enough to encompass the breadth and depth of emotion that I feel for you all. I wish you all the best in this world.

I found myself alone in an isolation unit to rest and wait while they tried to figure out what had happened to me. The doctors weren’t sure if I had contracted the Hanta virus and another contagious disease that might have affected my lungs. I was not in any pain and thankfully my lungs had not bled since I was pulled from the water at the Old Man Dam. Now that I was in hospital and the danger of further damage to my lungs had seemingly passed the wonder and adrenaline of what I had just survived really kicked in. In a big way. I was alone in a beautiful room that looked out onto a court yard that was ironically water themed complete with a fountain and pool of water. It was hard to look at. I also had a hard time working up the courage to have a shower for days after the incident as I was convinced that I had developed a deadly reaction to all sources of water. It wasn’t until mom told me that I smelled pretty bad that I agreed to try having my first shower. In my traumatized mind I was convinced that getting anywhere near water might trigger my lungs to bleed. I was on high alert, ready to run out of the bathroom at the first sign of respiratory distress during that first trip in to the shower. Thankfully, that did not happen and I felt and smelled a lot better afterwards too.

While recovering in isolation, I saw a lot of doctors and nurses. Hospital staff came to clean my room and deliver my meals. Everyone that entered my room wore long, yellow disposable gowns and masks that covered their faces. Covered faces made it hard to read expressions, but I knew it was serious. The one facial feature that I could rely on to read on a person’s face was their eyes, and no one’s eyes were smiling when they came to visit me.

But my health had not deteriorated. Slowly, my exhaustion had passed and my appetite was good. I had no pain. I was given breathing exercises to do while resting in my hospital bed. When I now breathed in and out it now sounded like I had cellophane in my lungs that crinkled. I occasionally coughed up small brown, or dark red round bits of blood.

A few weeks later I was discharged with the diagnosis of idiopathic pulmonary hemosiderosis and the advice to rest and take it easy. With my mom as my care taker we returned to Waterton but soon decided it was best if we took a car trip to British Columbia so that we could locate my brother that we had been out of touch with.

After our car trip and successful location of my brother, I slowly returned to work and will be forever grateful that my employer was able to accommodate my sick leave. I was going to be able to finish my work contract! Six weeks later I had a follow-up chest x-ray and visit to the lung specialist in Lethbridge. I took the Greyhound bus into town for my appointments and mom paid for a B&B for me to stay at. My x-ray was clear, my energy was back – I was given a clean bill of health 😊

I felt frustrated that what had happened to me at the end of the summer might pull me back to my life as a dependent child. I felt like a comet that was trying desperately to escape the gravity of ‘planet parent’ and that this damn lung thing was trying to pull me back in. This was supposed to have been the fall that I began my adult life on my own – I was not going to fail to launch!

I fought against the urge to move back to the safety of home and parents and the security that this meant. I stayed that fall and winter in Calgary, and it was the right decision. Calgary became my home for the next 7 years of my life. Thankfully my youthful lungs recovered and life continued at the pace that only a twenty-something can sustain. I was slowly becoming an adult.

Once upon a time…part 2

I should have said right from the beginning, this blog is primarily about my health, beginning with a medical history – with lots of context. I don’t plan on going too much in to the other areas of my life where my health is not front and centre of mind. This is my attempt to try to understand what has happened, how my health has evolved over the years. Think of this blog as a big puzzle and each blog entry a puzzle piece. I want to reach out, to share, to find understanding with others. Maybe there is something in front of my nose that I have missed, a key piece of the puzzle. Maybe there are others out there who if they read my blog would say ‘me too!’. By sharing my experiences in this blog I hope to help with the understanding of LAM and it is also a way of diminishing some of the isolation and hopelessness I sometimes feel.

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Growing up, my parents enthusiastically showed my siblings and I how to appreciate the natural world, fall in love with the outdoors and the benefits of physical exercise. Regular outdoor outings often involved the whole family going camping, bike riding, hiking, skiing and swimming.

As a young family, my siblings and I were regularly enrolled in swimming lessons year-round, advancing our way through the coloured levels, receiving a badge that we could sew on to a hat or blanket – red, white, blue, bronze and silver cross. I can’t remember where all my badges ended up. I do however remember and wanted to share with you some flashes of happy times and delicious physical sensations;

  • After a swimming lesson, walking to the parked car during the frigid winter months, liking how my damp hair froze and crunched between my fingers
  • Family outings in the summer to the huge outdoor public pools in Ontario, picnic lunches and the smell of sunscreen swirling in the humid air
  • The initial adjustment my skin went through when I first slid in to the pool, the absolute silence as I tipped my head and ears back in to the water (unless the pool had submerged, waterproof speakers😊)
  • That all over body tired I would get, limbs heavy and relaxed after doing laps for a good hour in the pool, man I slept well those nights!
  • Family swims on the weekends at our local public pool, my dad patiently trying to help me on my weak point in swimming class, diving. How he would teach me how to dive off the edge of the pool (I’m still afraid of heights, and standing on a chair is still way too far from the ground for me…but thank you dad)

I loved those times.

As my siblings and I moved into the teen years, we became more independent, hanging out with friends and not as interested in going together to the pool.

One winter evening after we had moved out east, shortly after I stared university, mom and I were home alone. She turned to me while on the couch together watching TV and said, ‘lets go for a swim’ – I was game.

I looked forward to spending some girl time with mom and thought I would enjoy the warmth that the pool would offer after a chilly, snow-filled day. We chose a public indoor pool nearby that had an open evening swim; half of the pool was roped off for lanes and the other side was open for those who just wanted to paddle.

It had been a while since I had last made the effort to swim but I found my bathing suit and we headed out. I looked forward to getting back in the water and I thought winter would be a good time to start swimming regularly again. I started in the shallow end of the pool, and slowly lowered my body down in to the water to allow my body temperature to adjust before I started to swim. My chest felt tight – really tight. I could feel the pressure of the water pushing on my ribs. I thought it was probably my body adjusting to the warm humidity of the pool after the dry, winter air.

I did only a few meters of the front crawl and had to stop because I had to cough. I hadn’t inhaled any water – what was going on? I held on to the side of the pool while I waited for the coughing fit to stop.

It didn’t.

It was a dry hacking irritation deep in my throat – my cough still wasn’t stopping.

As I continued to cough I pulled myself out of the water and walked to the women’s change room. I stood in front of the sink and mirror and continued to cough, bent over, hanging on the edge of the counter, hacking until I gagged. A bit of blood came up and I spit it out and in to the sink. Alarmed, I drank some water from the tap.

A ball of fear started in the pit of my stomach when I saw the blood – I washed it down the sink and tried harder to get my cough under control. The cough began to subside as I continued to sip water from the sink tap, bringing it to my mouth in little sips from my cupped hand.

I was drained, tired, and more than a bit confused.  I was also scared.

When my cough stopped I easily walked out to the pool area but instead of getting in again, I walked to the edge of the pool to get my mom and told her what had happened. I told her that I was too tired to swim and we cut the swim short. I think I remember that we both thought that I probably had a virus and coughed so hard that I irritated my throat until the tissues bled a bit.

The cough and the blood never came back but I didn’t really want to go swimming again that winter. University and the habits of student life took over, the seasons changed and my health continued to be good. I continued with my life as a normal young adult until a few years later when on a sunny summer day, I found myself alone in a hospital isolation unit far away from family in Lethbridge, Alberta.

Once upon a time…

Over the past 20 or so years I have had several visits to the hospital for unusual and what was thought to be unrelated incidents. Each incident seemingly was an anomaly. Each time I asked the health care professionals who cared for me, ‘so what was that about?.. why did that happen?’ I often received frank and honest answers along the lines of ‘these things happen’ or ‘we don’t know why ’. I appreciated their honesty but felt frustrated. I resigned myself to the fact that I was just one of the unlucky ones, destined to ricochet off of or fall in to every unlucky hole that was within a 100 mile radius of me…
Looking back on most of the medical care that meant a hospital stay or visit to a specialist, I can now clearly see that there was a thread throughout these events that held things together and pointed to what was ultimately manifesting in my body. A process that I feel began a long time ago.
As a child I remember having horrible pains in my stomach, the kind that you double over with. No gas or diarrhea, just a horrible, stabbing pain that would bounce around my gut like lightning. I remember having to lie down, falling asleep at strange times, exhausted by the pain.
As a teen, when I was about 16 or 17 our family, originally from the east coast, moved from Ontario to back east again, to be closer to family and aging grandparents. It was hard to leave Ontario and my friends that I had known since elementary school. I remember lying in bed one night shortly after the move back east and as I flipped from my back on to my belly, I felt a hard lump in the right side of my gut. No pain. Just a lump. Lying in the dark, my bodily sensations were magnified it felt like my intestines were twisting up! Alarmed, I called mom, a nurse, in to my room so that I could describe to her what I was feeling. Seeing that I was not in any pain, she soothed me by saying that it was probably nothing. In all honestly I was a flighty, nervous teen, missing my friends and anxious about my last year of high school in a new school– it probably was nothing. As I feel asleep that night I tried not to and focus on the next day at school instead. The lump faded from the focus of my teenage mind.
Looking back now at these two memories, and because of what happened to me less than 10 years later, I wonder if some of what I was feeling was related to LAM…
On the other hand, if these vague twinges of ‘something’ that I blog about here had led to testing and a very early diagnosis, I would not have wanted to know back then. I am grateful for and will forever cherish the fact that I had a healthy, carefree childhood.
As I aged out of childhood, other odd and strange symptoms began to manifest. In my next blog I’ll write about the first time I experienced an incident that happened while swimming, something, up until that point was a sport that I had loved.

So That Happened…

Five years ago my life changed forever.

With one CT scan everything in my world was flipped upside-down.

I always thought that stuff like this could not happen to me ( I am not sure why- I mean why not?). Even as I was having the CT scan I thought ‘no way will they find anything too bad’.

I am not sure where I should start my story, where to begin or how far back to start. I know that I have had vague symptoms and had been treated over the years for things that I now know were signs of the disease progressing in my body. By ‘over the years’ I mean since I was a teen and I am now in my 40’s.

So yes, I guess that is where I will begin. I will begin by telling you about LAM and of the health issues I have had over the years and how I think they were all pointing to a disease that not very many people know a lot about. During and after my diagnosis I have received nothing but world-class care, and in a way, I am relieved to finally know what it is that I have been dealing with. I am grateful for the kindness that all of the doctors, nurses, lab technicians and receptionists have shown me. It has made this journey easier.

LAM can present differently for each person due to the nature of the disease and the lifestyle and physiology of each person who has LAM – it is a ‘constellation’ of symptoms that can be hard to pinpoint.

Later this week I will begin telling you about my story.