Mystery Diagnosis

June 2013: I became very sick with a cold. After over a week with this cold still lingering I decided to head to a walk in clinic. The doctor said it was a bacterial infection and prescribed me some antibiotics. A couple of days passed and I was feeling worse. I could barely get out of bed without using up all the energy I had. I didn’t have much of an appetite. At the time I was living with my parents, brother and twin sister. My sister Kelsey took me back to the walk in clinic. This doctor prescribed me a different antibiotic and sent me off. I woke up the next morning feeling frustrated that I was still showing no signs of improvement. I decided it was time to see my family doctor. He suggested I get some blood work done.
Later that evening the phone rang. It was my doctor calling about my results. He said your white blood cell count is extremely low and you need to get to a hospital right away. My WBC count was 0.1. Normal is between 4 – 11.  Kelsey rushed me to the St. Catharines hospital. More blood was taken. About an hour later a nurse came to me with a worried look on her face. She told me I would have to stay overnight. They wanted to do more tests. I was terrified. Nothing like this has ever happened to me. By this point it was 3 in the morning and I was exhausted. All I wanted to do was go home. Eventually I got a bed in the ER. Kelsey never left my side. She spent the night and even spent a couple hours cuddled up beside me in that bed. For anyone who hasn’t yet been a patient in one of these beds, there’s barely enough room for one body let alone two.

 

I was admitted with an unknown viral infection. During my stay I had blood tests repeated daily. My arms were so bruised. They were testing me for everything from Mono to AIDS. They couldn’t figure out what it was. I woke up in the hospital one morning to find I had a rash covering my entire body. It was red and raised little bumps and was hot to touch. I kept getting a fever so they would give me Benadryl and that would calm it down and help me sleep. Even though sleep in a hospital is nonexistent. I was seen by a doctor who introduced herself as an Oncologist. I couldn’t figure out why she was seeing me. I don’t have cancer I said to myself. She explained, if your WBC count doesn’t start to increase soon that she would like to do a bone marrow biopsy. No way I thought. I was determined to recover and get home.

I did just that. My WBC count began to recover and my rash slowly started to fade. After a week in the hospital which felt like a month I was finally discharged with a WBC count of 1.2. They still never had an exact diagnosis, but at that point I was just happy to be going home. It took me about 2 weeks to fully recover at home and get back to my normal self. Once it was all said and done I had missed about a month of work. I slowly started to feel better everyday. I was advised to get my blood work done weekly until it came up to a normal level. I visited my doctor often. He told me it would eventually come back up but it might be a little slow. It stayed at 3.4 which was close enough to the normal range my doctor didn’t think anything of it. I started eating healthier and I had tons of energy. I began running 3 times a week that summer. Months went by and it seemed my episode in the summer was finally all a part of the past, or so I thought.
December 2013: I started to have a mix of strange symptoms. I figured they couldn’t all be related. I found excuses for every symptom I had. I started feeling more tired than usual. The stomach bloating was accompanied by excruciating pain. On December 23 I came home from work and made plans to go out with friends. While showering my hand skimmed across my left breast. A lump. I got out of the shower immediately in a panic. The lump was large, very hard and irregular in shape. I was very worried but told myself it was probably nothing serious and it would go away on it’s own. I ended up going out that night but I was barely able to enjoy myself.
The next day was Christmas Eve. I woke up to find the lump had grown. My stomach pain was terrible still but I didn’t mention anything to anyone. If it hadn’t been during the holidays I probably would have made it to my doctor sooner. I just wanted to enjoy Christmas with my family and deal with it later. On the 27th I saw my doctor. He did a breast and abdominal exam. He told me it was a benign cyst. I mentioned my other concerns about my abdominal pain, tiredness etc. He didn’t really say much. I suggested getting my blood work done just to make sure everything was normal. I had my blood work done that day. The only thing I found strange was my white blood cell count was still below normal at 3.4. Still the same as when I last checked in August. My doctor didn’t seem concerned with it so I decided not to worry about it. I had my breast ultrasound done the morning of New Years Eve. The ultrasound technologist told me while performing my scan that it looked like a fibroadenoma. I wanted to be 100% sure it wasn’t cancerous so I insisted they schedule a biopsy. I would have to wait 1.5 months. He obviously didn’t think it was that serious so neither should I right?

 

The pain worsened and it began to hurt to urinate. A bladder infection I thought? I was too embarrassed to go back to my doctor again with another complaint so I decided to go to a sexual health clinic. I knew I could walk in and get a quick urinalysis done. The test showed that I had blood in my urine. I told the nurse all of the symptoms I’d been having and she prescribed me antibiotics for a bladder infection. She said it should clear up in a few days. The next day I started to feel even worse. I couldn’t even sit in my chair at work the pain was that bad. I also had a sharp pain in the back of my leg that had been bothering me for about a week. I remember complaining about it to my sister several times. Maybe I have a blood clot. She laughed at me and we both brushed it off. I left work early that day and spent the entire afternoon on the couch with a heating pad on my stomach. Nothing was easing the pain. That evening Kelsey took me back to the ER at St. Catharines hospital. They ordered a urinalysis and more blood work. Both came back negative for any infections. My white blood cell count was now at 4.9, higher than I had seen it in months. The doctor was still concerned about my pelvic pain so he ordered an ultrasound for the next morning. My parents were very concerned but when I came home that night and told them the tests came back fine, we were all confused.
The following day I had an abdominal, pelvic and a trans vaginal ultrasound done. I got the news that I would have to speak with the Gynaecologist. He viewed my scans and asked me a few vague questions. He diagnosed me with pelvic inflammatory disease. I was given 2 antibiotics by injection and was sent home with 14 days worth of oral antibiotics. He insisted I would start to feel better in a few days.
January 2014: I woke up early one morning with an extremely upset stomach. Antibiotics can do that. I spent the entire day on the couch. I had no appetite at all. I couldn’t eat or drink anything. I woke up early the next morning vomiting. I couldn’t keep the antibiotics down. My body wasn’t going to get the medicine it needed. If I couldn’t keep the antibiotics down I would be admitted to the hospital and hooked up to an IV. After my episode in the summer, I was determined to not let that happen again. I knew that if I went to the hospital that night I wouldn’t be coming home for a few days. 

 

The vomiting became so unbearable that my Mom dragged me out of the house at 10pm that night. She brought me back to the hospital. I was in rough shape. In the waiting room I vomited about 10 times. After waiting 6 hours they finally called my name. He ordered more blood work. My WBC count was now 64. Just a few days ago it was 4.9. How could that be? I knew something was seriously wrong. The doctor ordered an abdominal ultrasound and an x-ray. They also took a urine and stool sample. I spent the night in a chair in the ER with my Mom sitting beside me.


I was seen by an Oncologist. She said after looking at my blood smear she was very concerned. A bone marrow biopsy would need to be done this time. She gave me Ativan before the procedure. I remember feeling alot of discomfort during the procedure, like no pain I had ever felt before. The results from the biopsy would take 24 hours. A nurse soon realized I hadn’t gotten up to use to washroom in over 14 hours. My kidneys were shutting down and I wasn’t producing any urine. They immediately inserted a catheter.

The doctor came in with the results from my biopsy the next morning. I was alone at this point. My family was on their way to the hospital. She had a funny look on her face like she was very uncomfortable. I could tell she had something bad to say but didn’t want to spit it out. You have Leukemia she said. I stared at her blankly as she continued to talk. I didn’t hear a word she said after that. I was terrified. Tears began to cloud my eyes. As Dr.Lee stood at the side of my bed giving me the worst possible news, my family arrived. They looked at me and I looked back at them with tears rolling down my face. Dr. Lee started from the beginning. There wasn’t a dry eye in the room. I’ll never forget, my twin sister ran out into the hallway, my Mom not too far behind. I could see the two of them hugging each other and crying. They looked so scared.
I was diagnosed with Acute Myleoid Leukemia (AML) I was being sent to The Juravinski Hospital in Hamilton. The doctor reassured me that this type of cancer is treatable but I would need chemotherapy right away. The hospital was notified and as soon as a bed was ready for me I would be taken there by ambulance.

While waiting to be transferred my condition worsened. I was having trouble breathing from all the fluid in my lungs. My kidneys were shutting down. I was getting sicker by the minute. The cancer was quickly taking over my entire body. The nurse hooked me up to oxygen and shortly after I was being taken down to the ICU for dialysis. I was not really aware of my surroundings at this point. The doctor made a small incision near my groin. They inserted a line to be connected to the dialysis machine. The dialysis itself doesnt cause any pain I just remember my whole body was stiff. Later the next day an ambulance was finally taking me to The Juravinski Hospital to begin my chemotherapy.

Once at Jurvinski I was taken to the Hematology floor where I didn’t stay long before they sent me to the ICU. I was still needing oxygen. Once in the ICU, they hung the bags of chemotherapy right away. For 7 days straight I was having 2 different kinds of chemotherapy drugs going into my body. Because of the state I was in they were only able to give me 50% of the normal dose of induction chemotherapy. I needed more dialysis too. They chose to go through the veins in my neck rather than my groin. They removed the tubes in my groin and covered my face with a surgical napkin. A doctor began to make an incision in my neck. I was on a high dose of Dilaudid at this point so I didn’t feel any pain at all. I could feel the blood dripping down my neck. I heard the doctor utter the words “It’s not working.” Flustered, she bandaged up that side of my neck and began making an incision on the other side. My veins were too small for the tubing. After an hour or so I began dialysis again. Talk about traumatizing.
I don’t remember the following week very well. I do remember the nurses in the ICU though and how amazing they were. So kind and so caring. I couldn’t get up to use the washroom so I had to call a nurse in every time to bring me a bedpan. I remember waking up in the middle of the night and I was in excruciating pain, like no pain I had ever felt before. Every part of my body hurt from my head down to my toes. The nurse would give me Dilaudid for the pain and rub my back until I drifted into sleep. I started to have these vivid, terrifying dreams, like something out of a horror movie. I would wake up sweating and out of breath. I woke up one night and the pain was so bad I honestly thought to myself..I’m going to die. I stayed in the ICU for 5 days before I was well enough to go up to the oncology floor. It had been 10 days since I last took a shower, ate or drank anything. I had no sense of time and I didn’t really know where I was. The fact that I had cancer hadn’t sunk in. I spent just over a month in the hospital having my initial chemotherapy and recovering afterwards.

The longest 34 days of my life. I spent the first 2 weeks in bed unable to walk on my own. I lost 25 lbs in 1 month. I had lost all of my muscle. I needed a Physiotherapist to help me walk again. I needed help doing everything from getting dressed to showering. I cried everyday. But slowly things got better. Everyone couldn’t help but tell me how strong I was. I was finally well enough to go home and rest before the next step in my treatment.

CONTACT CANDACE