Life With Cancer - Chapters 1-3

Chapter One - The Bombshell That Made My Life Stand Still

         Now, I’ve struggled with where and how to start this. I’ve finally figured it out, I’m going to give you a little background on how I used to be.

         Now I was a High School Senior, my graduation year. Life was great! I was graduating, going to go to Lac La Biche, Alberta for college to become a Social Worker, I had a boyfriend who I had been with for 8 months at that time, on the second round with him – it was a very rocky relationship. January 2001, I was very active, had a bunch of friends that I spent every spare in school with provided they had a spare too. At that time I was biking every day, had been for 5 years, it was my love and I looked forward to it everyday. I could bike forever without getting tired as long as I had water with me. At lunch hour in school, involved a game of No Rules Soccer with the guys, though most of the time I cowered because the guys were all bigger than me and they had no quelms on scaring me.

         February 26th that year meant that I turned 18, absolutely looked forward to it. My boyfriend had the following saying put on my cake: “Your not a year older, just a year closer to your death.” He had a very morbid, sick sense of humor then. As cute as it was, that wasn’t exactly what I had been looking forward to seeing on my 18th b-day cake. Had a lot of fun though. My birthday also one of the last normal days of my life.

         March came in with an unexplainable rash that I couldn’t see, but drove me insane. It itched and when I scratched; it burned. I went to the doctor and she couldn’t explain it, she did blood work and everything came back normal. She said I was healthy, and even suggested that maybe the rash was in my head. So I thought okay, so I’m nuts.

         April came, my appetite left, I bruised easily – which was normal for me. I always bruised easily but I really bruised easily and they stuck around for months. Still had the rash, went back to the doctor, more blood work and again was told there was nothing wrong with me. She gave me a couple of creams to try thinking maybe it was dry skin.. both creams made the rash worse. She was also scrounging because this rash was invisible. So she didn’t know what she was dealing with to begin with.

         April was a special month despite everything. My older half-sister, the daughter my mom had given up for adoption 23 years before had found us. My mom had put her up for adoption when she was a baby cause at that time, mom was 18-19, single and in the late 70′s single mom’s were a huge no-no. So mom did what she thought was best for my half-sister, in the mind set that she didn’t have the means to raise a baby by herself at such a young age. We met for the first time that Easter, and it was one of the best days of our lives. So we all made plans for my brother and I to go on visits for a week each that July.

         May came, still no appetite, my friends are getting worried about me, my one friend buys me a cheeseburger from the cafeteria and makes me eat it. I’m absolutely nauseous after eating it but I keep it down. Still have the rash, and now I have some pretty wicked dizziness going on to the point where I’m walking into things, I can’t walk a straight line. I remember one day during a spare my boyfriend and his best friend, and I were walking down the hall during class and his best friend reaches out and grabs me causing me to just barely miss a wall of lockers. And I’m also sleeping a lot. Went back to the doctor, more blood work was taken and still nothing. My doctor was shaking her head in frustration by now, cause she knew I wouldn’t come to her if I was “faking” these symptoms.

         June came, which meant graduation came too. Still no appetite, by this time I’m sleeping ALL THE TIME. Let me break my sleep schedule down for you, the best that I can remember it:

Weekdays:

6:30am - wake up for school, be on the bus by 7:10 - I sleep to the very last minute so 7am.

Bus ride was about 45 minutes to 1 hour - I sleep the whole time.

School - First period spare - 80 minutes - sleeping

2nd period - 80 minutes - only class of the morning - struggle to get through it.

Lunch - sit with friends, barely registering anything, by this time I have forsaken going out to play soccer, but sit in the library instead pretending to do homework.

3rd period - spare - 80 minutes - sleeping.

4th period - struggle to get through the last class of the day.

Bus ride home - another 45 minutes - 1hour - sleep the whole way.

Get home around 4:30pm, go to my room and sleep until supper.

Get through supper with eating very little.

By 7pm, after doing what ever homework there may have been if any, I'm sleeping until it's time to get up for school the next day.

Weekends:
If I wasn't spending them at my best friends place, I stayed home and slept as late as I possibly could before parents kicked me out of bed and that would usually be until 2 - 3 pm, with parents yelling at me to stop being lazy and get up.

At one point we had it counted out that I was sleeping 18-22 hours a day. Especially once summer kicked in.

         I was still scratching to the point where I’m practically clawing my skin trying to stop the itch. My eating has gone down to nothing, because I simply didn’t have the will to eat, absolutely no appetite. Now my scratching had gotten so bad I had scabs everywhere from scratching. Especially on my wrists, one of my teachers saw the marks on my wrists and reported me to one of the school counselors thinking I was either a cutter or trying to kill myself. I had been so intent on just trying to make the itch go away I hadn’t even thought about somebody getting the wrong idea. I remember it took me forever to explain that I wasn’t cutting myself on purpose or trying to commit suicide. Though I still don’t think the counselor believed me.

         Now after all this time I was still biking, one day I had gone for my routine bike ride after school, I was tired but I always pushed myself so I forced myself on my bike. I got to the mail box, I’m not sure how far away that was, it’s a ways anyway. I get to the stop sign and I look down the range road to the highway which was about 3 km away, I believe. I started on my way, and came to a driveway that is along the road, and I stop. I got off my bike and shook my head. I remember saying to myself as I walked my bike home. “Okay, I can’t make that ride, there is something majorly wrong with me.”  I got home and went to bed. That was the last time I rode my bike. I also had another surprise that month, my monthly stopped. Along with a few other surprise symptoms, I thought I was pregnant. I also contracted Strep Throat. So back to the doctor I went, more blood work was taken. I was given antibiotics for the strep throat, and I ended up missing almost two weeks of school. With diplomas coming up, missing two weeks – two very important weeks – was not a good idea.

         July came, I’m worried sick about the whole pregnancy thing, 18 with a dead beat boyfriend cause in those months our relationship went downhill really fast. So my first thought was, my sister lives in a small hick town called Bassano, Alberta where nobody knew me, so when I go visit her I would figure it if I was actually pregnant or not, as I was afraid to go to my parents and boyfriend about it. I wanted to be absolutely sure before I faced the music so to speak. So I couldn’t wait for my visit to come around.

         In the meantime, still in July. I have massive back spasms one night. I’m laying on my stomach on my bed, practically screaming in pain. I can’t move, I’m crying and mom is just beside herself as to what to do with me. I thought something was wrong with my kidneys. So, mom ends up rushing me to Tofield Emergency, as it’s the closest hospital and emptiest. I’m put in a bed and they can’t figure out what’s going on with me. I tell them all my symptoms including excrutiating back spasms and they take blood work, I swear they almost completely drained me with all the bottles, and vials of blood they took. The tech that took my blood rolled and collapsed every vein he touched. They tested me for every disease under the sun, everything from Menegitis to Diabetes to Mono to the common cold. They couldn’t find anything, but the doctor on duty, who happened to be my grandparents family doctor. He told me the following: “I would like to run a few more tests, but I would have to admit you to do them. So think about it and then just come in and we’ll admit you in the next few days or so.”

         Okay, so he gave me some inflammatories for the back spasms and sent me on my way with more holes in my arms than a junkie. Well, seeing that he gave me a choice, my first thought: “No way in hell am I going to go into the hospital and miss out on my visit with sister. Fuck that, and fuck him!” So, I sucked it up and went to visit my sister.

         When I finally got to my sister’s, I swallowed hard and confessed that I thought I was pregnant and I needed her help to find out if I was or not. She smiled, having had her oldest boy at 19, she totally understood what I was going through, and so we went through the steps. I ended up taking 3 home pregnancy tests. Why 3? Because one test was yes, one was no and the other was inconclusive. So we went to the medi clinic and had a pregnancy test taken by the resident doctor there, and her results were inconclusive too! She told me that I had the symptoms of being pregnant but the hormones weren’t there. So she suggested that maybe it was too early and try again with my family doctor for another pregnancy test. Now, I slept through most of my visit with my sister. My brother-in-law, his friend, Art who I met for the first time then, and my sister all thought I was sleeping too much, but they all passed it off as a teenager, just graduated high school. Teenagers slept a lot, etc. By this time my rash had made itself known, I was covered in little red spots, but it wasn’t measles, chicken pox or any of those sicknesses. Again it was still a mystery rash. In fact, Art thought I was the laziest person he ever met. My sister was worried about me because I remember the night Art came to visit, Miranda had made chicken. I love chicken. I had two bits of a small piece of chicken, said I was full, said I wasn’t feeling well and went back to bed.

         August came, and I was getting anxious. I had made a doctor’s appointment with my doctor for August 15th, 2001. So off to the doctor I went that day, sitting in the office I tell my doctor why I was there, after much tsking about possibly being pregnant (my doctor has been taking care of my health since I was weeks old) and doing the whole “baby having babies” speech, she ordered the pregnancy test, but then she decided to do a routine check. My skin color was so pale it was almost gray, she also noticed that my lymphnoids were majorly swollen in my neck. After more examination she discovered that all my lymphnoids were swollen which had her concerned, so she ordered more blood work.

         After the appointment and getting the tests done, I went home and waited. My dad was at work in the west end of the city. Mom, my brother and family friend, Pat went to the race track to watch some Drag Racing. I stayed home alone, because I don’t like racing and I had a lot on my mind.  I got a phone call not long after we had gotten home saying I wasn’t pregnant. I was happy and depressed with the news, my relationship was ending whether he knew it or not because he was being a total asshole. It was a little before 5pm, and the phone rang again, no big deal. I got up to answer it, when I saw the number was the doctor’s office again. My heart started pounding, my first thought – they fucked up, I’m pregnant. I answered the phone.

         “Hi Rose, it’s Les” (head nurse at my doc’s office.) “Dr. Stansberry just got your blood results in, she needs you and your parents to come in right away.”

         Strange, considering her office closes at 6, and considering I was home alone I asked if I could make an appointment for the morning.

         “No, you have to come in right now, she’s waiting for you.”

         “What’s going on?” I remember asking, I feel like I want to fall over and faint from panic.

         “I can’t tell you, that is for Dr. Stansberry to tell you.” She hung up after saying see ya soon.

         I panic, I phone mom and tell her what’s happening, she phones the doc’s office to see what’s going on that we have to be in there right away that night. Meanwhile, she has me phone dad and tell him to head home right now. Dad was just leaving work, and he was headed home when I phone him and I tell him what’s going on, so he said he would be home in half an hour or more. Mom phones me back and tells me that she had phoned the doctor and even though it wasn’t definite, the doctor thought she had found cancer, and that Pat was driving and they were on their way home. My reaction? I just sat on the couch in a daze, I might have cried because mom had been crying when she called me. I can’t remember what my reaction was.

         When we finally got into the doctor’s office it was after 6pm, the office was closed, but Dr. Stansberry was there going through records. She pulled out my bloodwork, from March to June and that days, the results showed my heboglobin had been dropping, but not enough for real notice, until that days blood work which had taken an instant drop. I can’t remember what the decrease was, but it was enough to tip her off. Dr. Stansberry looked like hell when we saw her, she looked like she had aged twenty years when we got there. She explained what she had found, Acute Lymphoblastic Leukemia, she explained what the cancer was. A cancer where the body produced more white cells than red cells, and these white cells were abnormal, they attacked the red cells, immune system. A blood cancer.

         Dr. Stansberry was apologizing profusely for catching it so late, that she should have seen it back in March, or one of those months. She had told me that if there was ever anything I needed, to go to her and she would give it to me, if it was in her power. She felt so bad. But as it was, she had still caught it early enough where I was still in shape enough to fight it.

         I remember while she explained what was going to happen to me, what the cancer was, and all that jazz, I just sat there still in a daze, as it hadn’t hit me yet what I was in for. She asks. “Do any of you have any questions?”

         “Am I going to die?” I asked her, just out of the blue. It was the one thing that had been circulating in my head since mom told me on the phone. I had, had family members die years earlier from cancer. To me cancer was this disease that you couldn’t beat. You had cancer, you were doomed, and I was only 18.

         “No.” Was her answer. I think I looked at her shocked, totally not expecting that. “You have a fight ahead of you, but Leukemia is one of the most beatable cancers out there. You are very lucky to have contracted this cancer and not some of the others. You have a fighting chance. The treatments they have now have been very successful. Don’t give up yet.”

         I think it was that statement that got me thinking, “okay, I’m going to beat this thing, I can do this.” And being totally ignorant to what chemo is like and just what was ahead of me I also thought: “How hard can this be?”

         I was glad that Pat our family friend, had gone with us to the doctor for support. I will always be thankful to her for being there. She was a nurse and took notes for us, as she knew mom and dad and I just shut down with the news, and to this day I can’t remember everything I was told during my battle. I fought through a daze.

         Dr. Stansberry while she had been waiting for us, had made a few phone calls and did some faxing. She had phoned the top Hemotologist (blood doctor as I was told what her profession was), Dr. Larratt to tell her about my case and see if she would take me on. Dr. Stansberry was out to get me the best care going, and I am thankful for that. She had also phoned the emergency at University of Alberta Hospital to book a bed for me, so that after our little conversation she was able to send me straight to emergency and I didn’t have to sit for five hours or whatever waiting.

         As it was when we got to emergency, and Dad informed them that Dr. Stansberry had phoned ahead and all that. They looked up my bloodwork on the computer, and promptly asked if I needed a wheelchair. I think I looked at the receptionist like she had two heads and said. “No, I can walk just fine. Why?” I got suspicious by the look of awe on her face.

         “Because you heboglobin is 69.” Like that was supposed to mean something to me. I was a normal girl, just graduated high school, and didn’t take biology. “You shouldn’t be walking, in fact you shouldn’t be conscious with hebolglobin that low.”

         As I found out later, heboglobin is a fancy name for keeping track of the oxygen level in your blood stream. As I also found out later on, that count should be between 80 and 122. 69 was a very bad number. The nurse in emergency explained to me that when the heboglobin gets low, people would start to experience nausea, dizziness, fainting and a few other things. So that explained the reason I was sleeping all the time, my dizziness, loss of appetite.

         I stayed in emergency until midnight as they were trying to free a bed up for me on the fifth floor, in the cancer ward. And therefore, my journey began.

Chapter Two - "You Won't Lose Me Mom"

         Now, being diagnosed with cancer didn’t happen in one day, it took three days. August 15th – suspicion that it was there. August 16th, all day was blood transfusions to get my blood count somewhat normal, though that would take almost a year to accomplish, along with a lot of tests on different parts of my body.  August 17th came in with the final diagnosis. I was positive for Acute Lymphoblastic Leukemia – ALL.

         Dr. Larratt with her resident intern at the time, who was introduced to us as Dr. Mark, so that he could watch how she delivered bad news, and explained what was going happen to me. I believe she was in that room with me for at least an hour if not more, first explaining what Leukemia was, then my treatment options and signing forms saying that I chose one protocol over another, and some more forms that covered her ass if things went wrong. Pat was sitting in a chair taking notes, because even to this day I can’t remember a single word Dr. Larratt said, again I was in a daze.

         I do remember her saying though that because it was ALL that I had contracted, and because of my age, I had an 80% survival rate. See, ALL is mostly common in children between the ages of 2-14. It’s a “childhood” cancer, and a lot of successful research has been done among children, where there’s a lot of ALL survivors. How did my age factor into it all? I was 18, I was borderline kid/adult. Adults survival rate for ALL is 50-60%, because adults are given a different chemotherapy protocol, not as successful as the pediatric protocol. If I was 19, I wouldn’t have had that 80% chance.  So that gave me hope.

         “Will I lose my hair?” I had asked.

         “Some of it, but not all of it.” Dr. Larratt answered, she said that some people don’t lose their hair at all. I was still glad that the month before I had chopped it all off at my boyfriends request, because I couldn’t stand losing my long, thick hair if it did happen.

         After she and Dr. Mark left, my family sat around me in silence. Mom was crying and I remember telling her “Don’t worry mom, you won’t lose me. I’m not going down without a fight.” Which made her cry even harder, but it was true. I had made up my mind, I wasn’t going to die, I wasn’t going to give up.

         A little while later, Mom said that her and dad were going to go to the cafeteria for coffee, as they had come back to the hospital early in the morning. I said, fine I needed to be alone.

         When I was alone, I remember looking out my corner window that looked down at the Courtyard and I could see people walking and eating and talking with whoever they were walking with, and I remember thinking. “I should be down there, not up here in a bed.” I started crying, and I know it wasn’t pleasant to listen to, as they were broken, loud sobs, I remember Dr. Mark knocking at the door. I was sitting up in bed, my knees pressed up into my chest and I was just bawling. He stood away from the bed, I think he was a little uncomfortable watching me cry.

         I remember him saying: “Everything’s going to be alright you know. You have a good doctor looking after you, she’ll do everything she can to help you beat this thing. You’re family cares about you, it looks like you have the support you need. It’s going to be alright.”

         I remember wiping away my tears and forcing a smile, and he smiled back. “It’s alright to cry too. You have a long journey ahead of you, but you’ll make it. You’re strong.”

         I believe he said more too, that more along the lines of medical stuff. I can’t remember everything he said, then he left me alone. A little while later mom and dad came back to the room.

         Then I was back to getting more tests done to see how my heart would handle treatment, and I believe that was also the day I had a PICC line (Peripherally Inserted Central Catheter Lines) inserted into my left arm. A PICC Line is a long term IV. It is a little surgery that lasts maybe 15 minutes, with a little local freezing. Through Ultra Sound, the surgeon inserts a very tiny tube that is smaller than a vein into a vein and it stops just above the heart. So that chemo iv drugs, iv medications and fluids are pushed directly into the heart, so that it is pumped through the bloodstream faster, for better effect. I remember when I was wheeled into the little surgery room, and put on the table, nobody told me what was happening. When they had my left arm out on this little platform, I’m on my back looking up at the ultrasound screen, and there were nurses and the surgeon moving around the room. I asked what was happening, and they said they were going to give me a long term IV so that whenever I had to get a treatment they didn’t have to keep poking me.

         Mom fought with the nurses to be at my side, but because of the ultrasound and to keep things sterile, a nurse took mom to a small room that was attached to the room where I was, and she was able to watch through a window.

         When the surgeon was ready to begin, and I saw the needle for the local anestetic and the tools he would be using to insert the PICC line. Being terrified of needles, I started hyperventilating, the surgeon refused to start because I couldn’t control my breathing. I remember the nurses telling me to take a deep breath, another nurse was holding my hand, I had tears coming out of my eyes. Then the doctor told me, “if you don’t settle down, and I miss, then I’ll have to do it again and you won’t be liking that.” And that made me control my breathing cause I really didn’t like the thought of have two holes in my arm.

         I started chemo I believe either later that day, or early the next day. I can’t remember exactly, I just remember it being very quick once I had the PICC line inserted. And continued to go through exams and tests that kept track of my heart and other organs to make sure the chemo didn’t attack them.

         As days went on in the hospital, I began to fear the place, I began to fear a lot of things. I didn’t relax because it seemed that every time I relaxed they did something to me that I didn’t like. I also felt like a pin cushion having needles inserted into my spine and hips (in a years time), and injections in the arms and stomach.

         I began to live in fear and paranoia afraid of what would happen next. When Dr. Larratt had said my protocol was extensive and aggressive, I had never imagined it would be THAT aggressive.

Chapter Three - Bye Bye Hair, Hello Reality

         Okay, I think one of two most tramatic experiences I went through during my battle was losing my hair. Which happened unexpectedly in the beginning of September of 2001.

         Now when I had asked my doctor back on that day when she had explained what was going to happen to me, I had asked. “Will I lose my hair?” She had told me that I had a good chance that I wouldn’t and if I did it would fall out slowly, and I’d probably just lose patches. She lied, but chemo chemicals are like that. They make liars out of everybody.

         I was at home, because I was going through this phase in my chemo where I was admitted in the hospital for a week at a time, where I endured 2 days and 1 night of what came to be known as “Round the Clock Chemo.” Why a week? Because the first 2 days is the Hydration period where they pump tons of fluid into my system, then the chemo for 2 days than the rest of the time in the hospital was to make sure the chemo was flushed from my system and to catch any major side effects that may occur. Now why I called it  “Round the Clock Chemo”? Because that’s basically what it was: 3 huge bags of iv chemo, that started one day, continued into the night and continued the next day until all three bags had been sent through my body simultaneously. No break, no recovering from one bag than on with the next, it was when one bag was done, up went the next bag. That was one of the perks of chemo, was you didn't feel the effects in the beginning, so it was like a walk in the park, until being exposed to them for a long period of time. I remember three huge bags of chemicals that reminded me of orange juice, cause that was the color and consistancy of the chemicals. The chemo drug was called Methotrexate, which played a huge part in my protocol.

         And when I wasn’t in the hospital for that week, I was going to the hospital three times a week to Outpatient for lower dosages of chemo, and blood work.

         I was on a few days rest at home, and I remember I was online talking with a friend of mine. I was telling him everything that was happening to me. He had gotten worried about me because my mom had given him the news, and he hadn’t been able to get to the hospital to visit me because he had a ton of weddings around that time to go to. I believe I was also talking to my sister and maybe another person on messenger at that time. I know I had three or four people up on messenger that night. Mom was in the kitchen doing something. I remember my head was itchy, so I went to scratch it and when I pulled my hand away, a handful of hair came with it. I looked down at my lap, and it was covered in hair, and I mean not just a few strands here and there. I mean it was COVERED in a layer of hair. I FLIPPED OUT! I told my friends and sister to hang on, and I went screaming into the kitchen, holding handfuls of hair. I was crying and absolutely hysterical. I was screaming that my hair was falling out, and mom was telling me to calm down, that it was going to be okay.

         I got back online, and told my sister and friends that my hair was falling out, and I ended up saying good night to my friends and sister because I was just too hysterical to continue on with any coherent conversation after that. Mom gave me a huge mixing bowl to put my hair in, as it was falling out so fast, and it itched where it landed, I think from that time which was late afternoon, early evening to the next morning when I woke up, I filled that mixing bowl three and half times with hair.

         The next day I was due to go to the hospital for a second bone marrow biopsy and an intrathecal. Now let me explain what these two procedures are, so you aren’t completely lost.

         Bone Marrow Biopsy – This is where they make a little tiny slit in the back just above the fleshy part of your butt, they insert a long needle that goes into the bone and draws out the fluid of the bone marrow, and they also take a little piece of bone from the hip for testing. Leukemia develops in the bone marrow among other places, and the best way to keep track of the Leukemia is to check the bone marrow. This is a very unpleasant procedure especially with only a local, and no moraphine like they had given me the first time they did a bone marrow biopsy on me.

         Intrathecal – Also known a Lumber Puncture – They freeze a spot in your lower spine, then they insert a long needle between two vertabrae, they remove a small amount (very small) of spinal fluid for testing and replace it with (in my case) chemo – the chemo they gave me in the spine was more Methotrexate, a stronger version of the drug to replace the spinal fluid they had taken out. Now for me being afraid of needles, I hated these.

         Now let me tell you, facing both of those procedures in one day AND losing my hair at the same time. I was NOT happy at all. I couldn’t wait for that day to end.  I can’t remember what else happened that day besides blood work which was becoming very common seeing I was getting blood work done three times a week, and then every day when I was admitted into the hospital for my “Round the Clock Chemo”.

         My hair was falling out so fast, and I couldn’t handle it. So Pat who was there, because I had asked her to come with us seeing what I was facing that day said 8 magical words. “Do you want me to shave your head?” She explained to me that if I let her shave my head, then what was left would be so tiny I wouldn’t notice when it fell out and it wouldn’t be so hard to handle. As it was my hair was short than, but it still was so tramatic for me that I agreed. So when we got home that day, she ran home and grabbed her razor and scissors. When she got back, I took a deep breath, sat in a chair and in 5 minutes I was bald. Why it didn’t take long? It was falling out faster than she could shave it. I cried my eyes out some more when I saw my hair laying on the floor.

         Something else hit me that day, when I went to the bathroom and looked at my reflection with my very bald head, that’s when it hit me. I had cancer, I was really truly sick. That was when Reality hit me like a brick wall. I couldn’t just smile and say “Haha I was faking it!” I couldn’t turn around and just be better and go back to my life as a normal 18 year old girl. I was really, seriously sick, there was no waking up and being better, there was no getting out of it. I remember going to my room then, back in that all too familiar daze, sitting on my bed with it’s clean sheets and blankets looking around my room at my books, and dragons, and thinking to myself. “This can’t be happening, this shouldn’t be happening. This wasn’t supposed to happen to me.” Then I remember thinking. “I don’t want to do this, I can’t do this!” Mom and Pat were talking in the living room, while I was having my little revelry, then I thought. “I have no choice, I HAVE to do this.” I also realized then that my life like I knew it, the carefree, active, do anything just because I can life was over, and my new life that consisted of drugs, pills, iv’s, iv poles, hospitals, more doctor’s and specialists than I can count and worry was just beginning.